Academic literature on the topic 'Medical laws and legislation – moral and ethical aspects – united states'

The interest in political crime has been growing in the Polish doctrine of penal law and criminology of the 1980's. In 1982, the Institute of Penal Law of Warsaw university organized a conference dealing with the problems of political crime and the status of political prisoners. In 1984, the works of J. Kubiak and S. Hoc were published, with those of T. Szymanowski and S. Popławski to follow during the next two years. In 1986, articles by Z. Ciepiński and S. Pawela appeared in the organ of the Academy’s of Internal Affairs Institute of Law, and the Learned Society for Penal Law devoted one of its 1987 session to the problems of political crime. The present paper formulates and develops the main threads of the lectures delivered in 1982 and 1987 by the present authors. Accepting the opinions of O. Kirchheimer and S. Schafer, classical in a sense, as to the extreme complexity of political crime and the impossibility of formulating a universal criterion basing on which such crime might be distinguished, we give an outline of the chief elements of that interesting social phenomenon. The oldest Roman legal constructions of proditio and perduellio were transformed during the period of empire into crimen leasae maiestatis, an institution that was to persist for centuries to come in the shape of offences against state or the ruler. The origins of the modern history of political crime as a separate legal category date back to the end of the 18th century and the changes brought about by the French Revolution. In the early half of the 19th century, France and Belgium were the first to grant to political offences a privileged status among prohibited acts, introducing the competence of assizes, a separate system of penalties, and abolishing death penalty towards political offenders; this also took place in several other European countries. The privilege of political offences was based mainly on their distinct motives and their perpetrators personality traits. The 19th-century optimism and romanticism of approach towards political crime paled in the late half of the century as the surge of anarchistic and revolutionary movements grew. The legal status of a political offender started to worsen; the great 20th-century dictatorships were tragic to their real and supposed antagonists, treated with particular severity so as to terrify the citizens. In about two centuries of modern history, the legal category of political offence went through all possible extremes: now the time has come to reconsider it. A general, universal and timeless definition of political offence does not seem possible, even the most extreme of its forms being relativistic. Offenders called by some ,,terrorists’’ are ,,fighters for liberty’’ in the eyes of others. On the other hand, state terror is sometimes given the neutral name of ,,special operation’’ or ,,new policy’’. Last of all, one might also say quoting the extreme section of radical criminology that there is a political entanglement to all offences, administration of justice being an instrument of politics. Also the opposite is sometimes contended, namely, that political crime does not exist at all, enemies of the system being common criminals or madmen. There is also a marked trend to exclude terrorism, war crimes, and genocide from the discussed definition. In international law, the notion of political crime is purely functional: the separate states base on it when refusing extradition and granting political asylum. As regards the internal penal legislation, some states only distinguish political offence as a legal notion. There are in the doctrine of penal law three basic methods of defining that notion. According to the objective approach, the kind good being assaulted constitutes the essence of political crime: thus the group of such acts is restricted to direct attempts against the state's basic political interests only. According to the second conception, the subjective one political crime is any prohibited act committed for political motives or to political end. The third, mixed theory consists in taking both these aspects into account: the interest protected by law and the perpetrator's ideological motivation or aims which cannot be recognized as censurable. Additionally, the preponderance or domination theory allows for a punishable act to be recognized as a political offence if political elements prove to have predominated in the given circumstances, aims, and motives. Robert Merton's was the most successful attempt to characterize a political (nonconformist) offender. Contrary to the common offender, his political counterpart 1) makes no effort whatever to hide his infringement of norms he repudiates or questions as to their legal validity; 2) he wants to replace the norms he considers wrong with other norms based on a different moral foundation; 3) his aims are completely or largely disinterested; 4) he is commonly perceived as quite different a person than a common offender. If we broaden the notion of ,,nonconformist" by adding adjectives like ,,religious" and ,,ethical" to it, we bring it closer to that of ,,convictional criminal" used by Schafer and of ,,prisoner of conscience" used by the Amnesty International. The radical trends in sociology and criminology of the recent decades brought an important element to change the aproach to political crime: an opinion is promoted that the state itself is the main source of that crime as it may use every possible legal norm and institution to fight its opponents. As opposed to the two countries where the conception of political criminals separate status was born, France and Belgium - discussed particularly broadly by the authors of lectures - the United States repudiate in their law and law courts decisions the existence of political crime. Instead, there is ,,civil disobedience'' which, together with the specifically American constitutional mechanisms, constitutes an instrument of the struggle for the protection of civil rights and liberties. The fact is stressed in the legal and criminological literature that a refusal to recognize the political character of acts that deserve such recognition contributes to the discredit of administration of justice as the establishment's political instrument. At the same time, various methods of illegal ,,neutralization" of political opponents are brought to light, including the so-called dirty tricks of the FBI and the different forms of abuse of authority by the CIA. In Great Britain, there is according to the official standpoint no political crime in the light of penal law. But the problem itself does exist in practice which is evidenced among others by the quest - a feverish one at times - after the measure to control the difficulties resulting from it; among such measures, there are administrative acts or on appropriate interpretation of the existing regulations, e.g. rules of imprisonment. The doctrine of penal law and criminology do not seem too interested in the discussed problem; its treatment by L. Radzinowicz and R. Hood is no doubt an exception, particularly if we consider the fates of the activists of the three socio-political movements before World War I: Chartists who fought for workmen’s rights, Fenians who demanded the grant of rights to the Irish, and suffragists. Despite the fact that the problem is only treated in its historical aspect, materials of immediate interest can be drawn from its analysis. In the Federal Republic of Germany, political crime lacks a separate status: yet a growth in the interest in such crime can be observed. This was particularly true in the seventies and was due to the activities of terrorist groups and to students protests. Also G. Radbruch’s conception of ,,convictional criminal’’ plays a certain part there, among intellectuals with leftist tendencies above all. Also in that country, the discussion grows especially important about the relation between the powerful and the powerless. Another significant point is H. J. Schneider’s demand for the problems of political crime to be granted a privileged position in criminological research. Considering the aspects of that crime in their broad interpretation, Schneider found it possible to include both terrorism and genocide in his discussion; thus, for the first time ever, a profound treatment of Nazi crimes was included in the West-German criminology. In Poland, after the country regained independence in 1918, several different laws were in force for over ten years concerning political crime and prisoners, in a difficult internal situation. In 1931, uniform rules of imprisonment entered into force which provided for no mitigation for political prisoners. The penalty of arrest, introduced by the 1932 penal code admittedly included certain elements of the status of a political prisoner, but the opposition’s struggle for its proper formulation went on till the outbreak of World War II. After the war, ,,counter-revolutionaries’’ and ,,traitors of the nation’’ were treated with utmost severity. This situation in which political opponents were so treated on a mass scale ended with the fall of Stalinism. The recent Polish discussion about the notion and status of political prisoner dates from the events of 1980-1981. Many were not aware at that time that there had been in the 1970’s in Poland a partial legal regulation of the special status of persons defined as perpetrators of political offences. It followed from the fact that Poland ratified in 1958 the ILO Convention No. 105 and that in consequence, the Minister of Justice issued an appropriate order. In the provisions of the decree (issued on the imposition of martial law on December 13, 1981) on remittal and forgiveness of certain offences, those ,,committed for political reasons’’ were mentioned amond others. Thus the lawyers could argue that the notion of political offence was know to the legislator, the only problem consisting in providing a more detailed legal regulation of that sphere. But the authorities chose a different solution. At the beginning, those convicted of the sc-called ,non-criminal" acts were granted an actual (and not legal) status of political prisoners. Later on, most of such persons were released from prison by the terms of the succeeding amnesty acts. in 1986, the Act on ,,decriminalization'' transferred the competence to decide in most of those cases to misdemeanour courts. The interest in the problems of political crime, increased since 1982, still persists in the circles of the Polish doctrine of penal law and criminology. There is a general trend to give that notion a broader interpretation as compared with the present doctrine of penal law which practically limits its range to offences against the state's basic political and economic interests only. We believe the Polish doctrine of penal law; criminology and legislation in Poland now face at least three basic questions: 1) whether to introduce into the law a special status of political offenders and prisoners in its traditional construction; 2) whether to recognize similarly a privileged legal situation of a larger group of ,,ideological nonconformists" mentioned by the ILO Convention No. 105;3) whether and to what extent to include in the notion of political offence the prohibited acts committed by state functionaries while exercising authority.

Aim: Explore nurses’ values and perceptions regarding the practice of medical aid in dying. Background: Medical aid in dying is becoming increasing legal in the United States. The laws and American Nurses Association documents limit nursing involvement in this practice. Nurses’ values regarding this controversial topic are poorly understood. Methodology: Cross-sectional electronic survey design sent to nurse members of the American Nurses Association. Inductive thematic content analysis was applied to open-ended comments. Ethical Considerations: Approved by the institutional review board (#191046). Participants: 1213 nurses provided 3639 open-ended comments. More than 80% of participants self-identified as white 58% held a graduate degree; and half were of Christian faith. Results: Values ranged on a continuum expressed through four themes: “Honoring Patient Autonomy without Judgment,” “Honoring with Limitations,” “Not until...,” and “Adamantly against.” Some felt it was a duty to honor the patients’ wishes, set aside own beliefs, and respect patients’ choices often with a spiritual connotation. Nurses held concerns about the process, policy, potential psychological harm, legal risk, and the need to learn more about MAID. Nurse who were adamantly against MAID associated the practice with murder/suicide and against religious beliefs. Disparate values were expressed about changing the MAID legislation to allow patient support with taking MAID medications and allowing MAID via advance directive. Conclusions: Nurses desire more education on MAID. There is not one universally held position on the nurse’s role during MAID. Healthcare policy/standards need to accommodate the wide variation in nurses’ values. Implications: Nurses desire education regarding their role in MAID. Nurses are encouraged to participate in policy discussions as the practice becomes increasingly legal. Managers need to expect that nurses, patients, and families will need psychological support to participate in MAID. Careful construction of policy/standards is needed to minimize conflict, moral distress, and psychological harm amongst nurses. Further research is needed.

Photo ID 129550055 © Katarzyna Bialasiewicz | Dreamstime.com ABSTRACT It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon, and today, about 20 percent of people in the US live in jurisdictions that permit MAiD. The New York State legislature is currently considering a bill that would permit Medical Aid in Dying for terminally ill patients in certain defined circumstances. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions. This demonstrates that legislation can simultaneously grant terminally ill citizens the civil right to access MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. Given the copious evidence gathered in the past decades, concerns about abuse can no longer be credited as grounds for opposing the passage of legislation that is demonstrably both effective and safe. INTRODUCTION It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon,[1] and today, about 20 percent of people in the US live in jurisdictions that permit MAiD.[2] Other jurisdictions, including New York, are actively considering adopting MAiD laws. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions, demonstrating that legislation can permit MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. The data should allay the concerns of those who oppose MAiD due to the risk of abuse, coercion, and a hypothetical slippery slope. We, as a society, as clinicians, and as ethicists, must remain vigilant and prevent abuse of MAiD, given the potential risks in the community and in congregate care settings and the risk of patient exploitation by family members. However, given the copious evidence, concerns about abuse do not justify opposition to legislation that is effective and safe. I. New York’s MAiD Bill The New York State legislature is currently considering a bill that would permit MAiD for terminally ill patients in defined circumstances.[3] The bill applies only to adults with a terminal illness or condition that is “incurable and irreversible” and “will, within reasonable medical judgment, produce death within six months.” The bill contains numerous protective requirements: MAiD requests can only be made by the patient themself; requests cannot be made by healthcare agents, surrogates, or anyone else; MAiD requests must be made both orally and in writing to the patient’s attending physician; No person is eligible for MAiD solely because of age or disability; The patient’s attending physician must determine the patient has a qualifying terminal illness, has decision-making capacity, and has made a voluntary, informed decision to request MAiD, in the absence of coercion; These determinations must be confirmed by a second consulting physician in writing; If the attending physician has any concern that the patient may not have decision-making capacity, the patient must be referred to a mental health professional; The attending physician has additional duties to the patient, including ensuring the decision is informed, by discussing the patient’s condition and prognosis; discussing the MAiD process, and treatment alternatives like palliative and hospice care; offering referrals to other appropriate treatment, like palliative and hospice care; and educating the patient that their request can be rescinded at any time and offering them an opportunity to do so; The written request must be witnessed by at least two adults who cannot be (i) related to the patient, (ii) entitled to any portion of the patient’s estate, (iii) employed by a healthcare facility where the patient is receiving treatment or residing, (iv) or the attending physician, consulting physician, or mental health professional determining decision-making capacity; and MAiD medication must be self-administered by the patient, and it must be voluntarily ingested.[4] ARGUMENTS FOR AND AGAINST MAiD II. No Evidence of Abuse of Existing MAiD Laws MAiD supporters and critics alike have a concern about the abuse of MAiD. For this reason, MAiD laws throughout the US incorporate strict eligibility criteria and protective procedural requirements. For instance, patients are eligible only if they are terminally ill with six months or less to live, more than one physician must be involved, and requests must be witnessed (by individuals unrelated to the patient who will not profit from the patient’s estate). MAiD requests have been closely examined in the 27 years since Oregon became the first state to legalize the practice. The results show that these compassionate and protective measures have worked. There have been no documented or substantiated incidents of MAiD abuse since Oregon became the first to implement a MAiD law in 1997.[5] In 2019, the executive director of Disability Rights Oregon (DRO), an organization mandated by federal law to investigate complaints of abuse or neglect of people with disabilities, reported that DRO has never received a complaint that a person with disabilities was coerced into obtaining a prescription for MAiD drugs.[6] A recent study of aggregated data from all nine of the US jurisdictions with publicly available MAiD records from 1998 to 2002 found that 95.6 percent of those who died by MAiD were non-Hispanic white individuals, and 53.1 percent were male.[7] 72.2 percent of these individuals had at least some college education, 74 percent had a cancer diagnosis, and the median age of MAiD death was 74 years old. Only 11 percent of patients were uninsured. MAiD users tend to be white, older, educated, diagnosed with cancer, and insured. Fears that MAiD would overwhelmingly be used by (or on) the poor, the uninsured, the uneducated, or racial and ethnic minorities have not materialized. This data has actually raised a converse concern: that MAiD may, inequitably, not be readily available to less privileged populations or those with a diagnosis other than cancer.[8] Opponents of MAiD may argue that the recent relaxation of certain legal restrictions in some jurisdictions is evidence that the slippery slope to unrestricted euthanasia has begun. This is a mischaracterization. Certain restrictions have been adjusted. For instance, Oregon and Vermont removed the residency restriction that previously excluded non-residents from eligibility.[9] Both states changed the residency requirement due to lawsuits challenging the constitutionality of requiring residence.[10] New Jersey’s law will likely change soon, as well.[11] Initial MAiD laws were drafted to be highly restrictive out of concern about unintended and unforeseeable consequences. Given the gravity of the subject, decades ago, it was better to err on the side of caution, even if that meant excluding from eligibility people who ought to, ethically or legally, be included. Now, with nearly 30 years of experience and data, we can better determine which requirements are necessary to appropriately protect patients, clinicians, and society. Restrictions proven to be unnecessary can now be modified. The core purposes of MAiD laws and the rights and protections they provide are not changing. Rather, a few aspects of the regulations are being adjusted so they are not more restrictive than necessary to achieve their purpose. The ever-growing body of evidence that MAiD laws can adequately protect against abuse and the mythic slippery slope has assured many that their fears will not materialize.[12] For example, NYU bioethicist Arthur Caplan was once a vigorous opponent of MAiD. He worried that MAiD laws would lead to the abuse of the poor, uninsured, and disabled in service of cost-saving or the convenience of others. [13] But, after closely following the empirical evidence from MAiD early-adopters, Oregon and Washington, Caplan changed his mind. In 2018, he argued in favor of the NY MAiD bill before the New York State Assembly Standing Committee on Health.[14] Discussing his review of evidence from these states, Caplan stated: I found no cause for my concerns, none with respect to the slippery slope. There isn’t solid evidence of coercion or duplicity being exercised with respect to people who choose assistance in dying in either state. The police, government officials, families of those who have chosen to use the legislation and the general citizenry find no causes or basis for changing the laws due to abuse or misapplication . . . These slippery slope arguments are just not true . . . there is no current factual support for this slippery slope argument that vulnerable individuals are at risk for being coerced into using the law.[15] Decades of evidence has shown that legislation can simultaneously grant terminally ill patients access to MAiD while also protecting against coercion and abuse. In the face of this evidence, continuing to deny access to MAiD because of hypothetical abuse is unjust and unethical. III. Views of Opponents are Neither Grounded in Fact nor Consistent with Current End-of-Life Practices a. Risk of coercion One common argument heard today from some disability advocates who oppose MAiD goes something like this: Everybody who would qualify for and use MAiD is (or will become) a disabled person, so MAiD only kills people with disabilities. The most common reasons people choose to end their lives via MAiD are disability issues, like loss of autonomy, less ability to engage in activities, and loss of dignity. They argue that, instead of making it easier for disabled people to die, we should make sure that proper services and support exist so that disabled people do not choose to die. Such disability-rights-based arguments tend to assert that to avoid abuse, we must prohibit MAiD altogether. They argue that legalizing MAiD will inexorably lead to abuse and coercion, and disabled people will be pressured into suicide. Some even argue that MAiD laws are the first step to euthanasia, noting the path in other jurisdictions.[16] As an initial matter, people with disabilities deserve adequate support and services, and these are not always available to them. People with disabilities have faced tremendous discrimination in the healthcare system and have been historically prevented from accessing proper care and asserting their autonomy. Ensuring that all can access adequate end-of-life care, like palliative or hospice care, is an ongoing battle that ought not be abandoned. But fighting for adequate end-of-life care and legalizing MAiD are not mutually exclusive. In Oregon, 90 percent of those who access MAiD are enrolled in hospice and states with MAiD laws tend to have better access to palliative care than states without.[17] MAiD proponents seek only to add another choice for the dying, not to diminish any other options. This is reflected in the text of New York’s pending bill, which explicitly requires patient education and referrals to appropriate end-of-life services, like palliative care and hospice.[18] No one has openly argued that society should hold terminally ill patients hostage in order to obtain broader support and funding for palliative care, but that is the practical effect. Beyond the need for supportive services and proper access to the full range of end-of-life care options, the disability argument fails. First, the assertion that MAiD laws will be abused and disabled people will be coerced into suicide is not grounded in fact. To the contrary, real-life evidence gathered in over two decades of legal MAiD has shown no documented or substantiated incidents of abuse, as discussed above.[19] The slippery slope has simply not materialized. Advocates for people with disabilities who are opposed to MAiD have not clearly articulated exactly who is vulnerable to being coerced into obtaining a MAiD prescription or even how such coercion could logistically occur. Most people with disabilities are not vulnerable to MAiD abuse, as they do not have a qualifying terminal illness or lack decisional capacity due to a developmental disability and are therefore not eligible. MAiD opponents appear to be claiming that all those who qualify for MAiD are vulnerable and seek protection from MAiD laws. But this would include many of the people that, over the past decades, have aggressively and publicly advocated for access to MAiD – terminally ill people, like Brittany Maynard,[20] many of whom lobbied hard for the passage of MAiD laws while knowing that they themselves would die before the laws passed. Opponents of MAiD from a segment of the disability rights community are telling individuals who they claim, without permission, as members of the MAiD opposition community, that they must all endure unimaginable suffering without a MAiD option because they must be protected from theoretical coercive harm. People with disabilities should be allowed to make their own choices. No one, not even the most well-meaning advocate, should be allowed to obstruct a patient’s end-of-life choices – those choices belong to the patient alone. b. Argument That the Demand for MAID is a Result of Poor Disability Services Second, the argument that terminally ill patients would decline MAiD if only they had better disability services or support is disingenuous to the extent that it ignores the fact that people choosing MAiD are actively dying. No provision of supportive services can change this. And it is perfectly reasonable for someone who knows that they will die in less than six months to want some control over the manner of their death and to avoid the deterioration, indignity, and suffering that could come with it. The argument construes a MAiD death as a choice to die rather than live with a disability. But individuals choosing MAiD are not choosing death – death is coming and coming quickly. MAiD simply offers some control over this reality, giving patients an option that is safe, certain, and painless. Certainly, supportive hospice services should be available for these individuals. But there is no evidence demonstrating that any amount of service would eliminate the need and desire for the MAiD option. c. Inconsistent Positions on MAID and Other Ending Life Care Options: Palliative Sedation and VSED MAiD opponents who are concerned about abuse and coercion often hold inconsistent views on other currently available ending life care options.[21] For example, some argue that palliative sedation[22] renders MAiD unnecessary and does not present the same ethical problems.[23] However, whereas MAiD can only be chosen by the patient themself (and the patient must have decision-making capacity), the same is not true for palliative sedation. Palliative sedation, a valuable modality of end-of-life care, does not have to be initiated by the patient. If the patient is deemed not to have decision-making capacity to make that decision, their healthcare proxy can decide to initiate the process and continue it until the patient dies. Individuals other than patients often choose to begin palliative sedation and continue it to its inevitable conclusion. And because palliative sedation does not require enabling legislation, none of the protective safeguards incorporated in MAiD legislation are available to protect those who receive palliative sedation. Some may try to differentiate between palliative sedation and MAiD by saying that once started, palliative sedation can always be discontinued – it need not end in the patient’s death. This is true, but the very process of palliative sedation will inevitably make the patient insensible or unconscious or otherwise unable to exercise a choice to stop sedation. With MAiD, the patient must self-administer and ingest the medication on their own, with death following quickly. The patient can choose to forgo MAID up until the very moment of self-administration. Considering MAiD’s procedural safeguards, including that only the patient may choose and administer MAiD, MAiD patients are offered more protection from potential abuse than patients who receive palliative sedation. While some have vocally opposed MAiD for decades, there has not been similar opposition to the option of voluntarily stopping eating and drinking (VSED). With VSED, adults with decision-making capacity make a voluntary decision to refuse nutrition and hydration to die more quickly. People choosing VSED are, essentially, making the same choice that people choosing MAiD do. But VSED is a less predictable process that takes much longer to complete. Unfortunately, the process also carries a risk of unpleasant side-effects, though proper care can help mitigate them. Additionally, the practice of VSED is not constrained by statutorily defined protective measures, as is the case with MAiD – one does not even need to have a terminal illness to choose VSED.[24] It is logically inconsistent for those who oppose MAiD because of the perceived potential of abuse to hold different views about VSED.[25] If malevolent actors can unethically pressure or coerce patients into MAiD, they can also coerce them to stop eating and drinking. As with palliative sedation, it could be argued that an important difference is that VSED can be stopped, unlike MAiD. This argument fails clinically and ethically. As with palliative sedation, the VSED process eventually results in the patient losing consciousness and decision-making capacity. The patient generally becomes unarousable for a period that could last for days or even weeks. For this reason, it is crucial for VSED patients to express their choice in writing (or preferably in video recording)[26] to ensure that they will not be given nutrition or hydration when they are no longer able to enforce their refusal (or if they begin asking for nutrition or hydration). Therefore, there is a period in which the patient cannot decide to end the process, just as with palliative sedation. To the extent that someone is so concerned with potential abuse of MAiD that they seek to ban it but have not expressed similar concerns with VSED, these positions are inconsistent. At a NYS Bar Association-sponsored conference on MAiD in 2019, David Hoffman asked a MAiD opponent whether, “as someone who is looking out for the interests of a segment of the disability population,” she supports palliative sedation and VSED.”[27] Kathryn Carroll, who represented the Center for Disability Rights (“CDR”), confirmed that CDR did not oppose palliative sedation and did not offer a position on VSED. She noted the subtle difference in intention: I don’t believe the Center for Disability Rights has taken issue with palliative sedation. And my understanding is that there is a key difference between palliative sedation and assisted suicide, particularly in that palliative sedation, the point is not to bring about the death of the person, but to relieve the pain that they are experiencing. And so the death is more of a side effect rather than the intended outcome.[28] During the questioning, she provided no explanation as to why the potential for abuse would be different among palliative sedation, VSED, and MAiD.[29] The other MAiD opponent on the panel, Dennis Vacco, of Vacco v. Quill[30] fame, interjected but could not explain any ethically significant difference between VSED and MAiD. Instead, he focused solely on palliative sedation, stating that the relevant difference is that palliative sedation can be stopped: . . . treating the pain including what you referred to as terminal sedation, is not moral and legally and ethnically the same as physician-assisted suicide . . . The fact of the matter is – the difference is you can terminate that treatment, and it’s the permanent aspect of physician-assisted suicide that goes back to what I said 20 minutes ago. You can’t put the bright line anyplace else other than where it is.[31] But, as discussed above, that difference is of little import, given that palliative sedation results in patients without the ability or capacity to make the choice to stop treatment. Vacco then reverted to his concerns about the potential for coercion and the elusive slippery slope, referencing his primary argument that the only way to ensure there is no abuse of a MAiD law is not to have one at all: The bright line that is created by the law in the state of New York, which makes physician-assisted suicide a manslaughter in the second-degree, or assisting suicide by anybody, manslaughter in the second degree . . . is unfortunately the only place that line can be. That line should not move further toward accommodation. And we see here in the context of . . . all of the so-called protections in the statute. With every protection that is not prohibition, with every protection, you raise the possibility of abuse. You raise the possibility with every protection.[32] Neither Vacco nor Carroll addressed the fact that many common practices today can be the result of coerced decisions. These practices have none of the safeguards contained in MAiD legislation. As another panelist, David Leven, stated: consider that people who want to have life-sustaining treatment withdrawn, whether it’s a ventilator or feeding tube, they can also be coerced by family members. That can happen even more often, of course, because that process takes place more and more often, and there are none of the safeguards that we’re talking about here . . . there are risks involved in any process which might result in a hastened death. But there seems to be very little risk involved with medical aid in dying based on the experience in 40 years and the nine states which now permit medical aid in dying.[33] There is an inescapable inconsistency within the disability argument: one cannot logically be so concerned about the abuse of legalized access to MAiD to justify opposing all MAiD legislation while simultaneously supporting options like palliative sedation or VSED as abuse-free alternatives. d. Argument Against Speaking for a Community with Diverse Views Finally, while some disability advocates opposing MAiD will claim terminally ill patients as part of their community, they have no right or authorization to speak for the extremely heterogeneous group of terminally ill patients or the disability community[34] as a whole. The disability community is not homogenous; while some members oppose MAiD, others support it.[35] Recent polling indicates that MAiD may have broad support across the disability community.[36] e. MAiD Opponents Hold the Rights of the Terminally Ill Subordinate to Their Personal Morality and Unsubstantiated Theoretical Concerns The argument that does not get much attention, the one that is the simplest and perhaps even the most compelling, is that all killing is wrong, and the government ought not to be in the business of enabling it. That is certainly a compelling religious and moral argument against individuals engaging in any form of acts that result in ending a human life. But such an ethical or theological position does not dictate that individuals who hold different views on personal morality should be precluded by the state from accessing the most safe, certain, and painless means of addressing an invariably terminal illness. Arguments like the one described above by Vacco (that the only way to completely avoid potential MAiD abuse is to prohibit MAiD) are essentially claiming that the safest thing to do is to subordinate the suffering of the terminally ill to avoid the more subtle task of balancing the interests of two different groups of New York state citizens. But surely, that is the role of the legislature every day. And we should expect no less from the legislature on this issue. The best way to ensure no one dies in car accidents is to prohibit driving. But instead of doing so, we implement safety regulations (like speed limits) to balance the right to travel with the right of everyone else not to be killed in the process. Evidence demonstrates that MAiD legislation can also strike a balance between the rights of the terminally ill and the need to prevent harm. It is not justifiable to support a blanket prohibition of MAiD. CONCLUSION Opponents of MAiD have had decades to cite problematic case studies or formulate a compelling moral argument against it that is grounded in data rather than an assertion of their personal morality. Plainly, no one on either side of the MAiD legislative discussion wants to see anyone subjected to involuntary euthanasia or coerced into MAiD as a better alternative to palliative care when such a plan of care is a viable alternative to “ending life care.” However, enough time has passed, and the risk of coercion has been given sufficient study and debate that we can now conclude, as a society, that the rights of the terminally ill and the rights of persons committed to living their best and longest life with a disability are wholly compatible. It is time for the legislature to strike the appropriate balance and give the terminally ill a well-regulated, responsible pathway to obtaining medication that can relieve their suffering in a manner that is safe, certain, and painless. - [1] Oregon’s Death with Dignity Act, Oregon Health Authority, https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/index.aspx [2] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [3] Medical Aid in Dying Act, A.995-A, N.Y. St. Assemb. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A; see also, Medical Aid in Dying Act, S.2445-A, N.Y. St. Senate (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/S2445A. [4] Id. [5] Ronald A. Lindsay, Oregon’s Experience: Evaluating the Record, 9 The American Journal of Bioethics 19 (2009), https://doi.org/10.1080/15265160802654137; Christopher A. Riddle, Medical Aid in Dying: The Case of Disability, in New Directions in the Ethics of Assisted Suicide and Euthanasia 234 (Michael Cholbi & Jukka Varelius eds., 2nd ed. 2023), https://doi.org/10.1007/978-3-031-25315-7; Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY ST. BAR ASSOC. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/; Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1; Fact: Medical Aid in Dying Laws Work to Protect Patients. (n.d.). Compassion & Choices. Retrieved September 5, 2023, from https://compassionandchoices.org/resource/fact-medical-aid-in-dying-laws-work-to-protect-patients; Frequently Asked Questions. (2021, December 7). Death With Dignity. https://deathwithdignity.org/resources/faqs/. [6] Bob Joondeph, Letter from Disability Rights Oregon (DRO), Compassion & Choices (Feb. 14, 2019), https://www.compassionandchoices.org/docs/default-source/default-document-library/disability-rights-oregon-dwd-letter-2-14-19.pdf. [7] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [8] Id. [9] Medical Aid in Dying: Act 39: Patient Choice and Control at the End of Life, Vermont Ethics Network, https://vtethicsnetwork.org/palliative-and-end-of-life-care/medical-aid-in-dying-act-39 (last visited Sept. 21, 2023). [10] Gideonse v. Brown, No. 3:21-cv-01568-AC (D. Or.); Bluestein v. Scott, No. 2:22-cv-00160 (D. Vt.). [11] Govatos v. Murphy, No. 2:23-cv-12601(D.N.J.). [12] Medical associations, historically opponents of MAiD, have begun adopting neutral positions, reflecting changing attitudes of the medical community. E.g., California Medical Association removes opposition to physician aid in dying bill, California Medical Association (May 20, 2015), https://www.cmadocs.org/newsroom/news/view/ArticleId/27210/California-Medical-Association-removes-opposition-to-physician-aid-in-dying-bill; Board directs CMS to develop and distribute “End-of-Life Act” education to members, Colorado Medical Society (November 22, 2016), https://www.cms.org/articles/board-directs-cms-to-develop-and-distribute-end-of-life-act-education-to-me; Vermont Medical Society Policy on End-of-life-Care, Vermont Medical Society (2017), https://vtmd.org/client_media/files/vms_resolutions/2017End-of-Life-Care.pdf (last accessed Sept. 21, 2023); but see Physician-Assisted Suicide, AMA Code of Ethics, https://code-medical-ethics.ama-assn.org/ethics-opinions/physician-assisted-suicide. (5.7 provides opinion opposing MAiD; opinion 1.1.7 provides opinion on conscientious objection.); The American Medical Association could vote to change its stance on medical aid in dying, Death with Dignity (Nov. 10, 2023), https://deathwithdignity.org/news/2023/11/ama-could-vote-to-change-stance-on-maid/ (Update notes that the AMA did not change its stance from opposed to neutral at its November 2023 interim meeting in Baltimore, but referred the resolutions for further study). [13] Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1. [14] Id. [15] Id. [16] Id. (noting the laws in Netherlands, Belgium and Canada.); see also National Council on Disability, The danger of assisted suicide laws: Part of the Bioethics and Disability series (2019). https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508.pdf. [17] Sean Riley & Ben Sarbey, The unexamined benefits of the expansive legalization of medical assistance-in-dying, 19 J. Bioethical Inquiry 4, 663 (2022) (citing Oregon Health Authority Center for Health Statistics, Oregon Death with Dignity Act: 2018 Data Summary (2019), https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year21.pdf and R. Sean Morrison, et al., America’s care of serious illness: A state-by-state report card on access to palliative care in our nation’s hospitals, 14 J. Palliat. Med. 10, 1094–1096 (2011)). [18] Medical Aid in Dying Act, A.995-A, N.Y. St. Assembly. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A [19] See also, Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (cataloging research in multiple countries and concluding that “there is no evidence that assisted dying laws have a disproportionate effect on people with disabilities”). https://doi.org/10.1111/bioe.13036 [20] Eyder Peralta, As Planned, Right-To-Die Advocate Brittany Maynard Ends Her Life, NPR (Apr. 3, 2014), https://www.npr.org/sections/thetwo-way/2014/11/03/361094919/as-planned-right-to-die-advocate-brittany-maynard-ends-her-life (Activist Brittany Maynard moved to Oregon after she was diagnosed with a malignant brain tumor, because her home state did not permit MAiD at the time). [21] Ending life care is defined as the final stage of the end-of-life care continuum, where the patient chooses to end their life as a means to end their suffering or unacceptable quality of life. [22] Palliative sedation is defined as “the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life,” and it carries a risk of hastening death. Molly L. Olsen, Keith M. Swetz & Paul S. Mueller, Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments, 85 Mayo Clin Proc 949 (2010). https://doi.org/10.4065/mcp.2010.0201 [23] E.g. Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide, Not Dead Yet, https://notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide (last visited Dec. 8, 2023) (describing palliative sedation as “a legal solution to any remaining painful and uncomfortable deaths; one that does not raise the very serious hazards of legalizing assisted suicide”); Testimony of CDR’s Kathryn Carroll, Esq. Opposing NY Assisted Suicide Bill A2383A, Not Dead Yet (Apr. 23, 2018), https://notdeadyet.org/testimony-of-cdrs-kathryn-carroll-esq-opposing-ny-assisted-suicide-bill-a2383a. [24] Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [25] This is not to say that MAiD and VSED are ethically identical. Different writers have articulated various reasons why MAiD and VSED are meaningfully different and meaningfully similar. Here we distinguish the potential for abuse, as this is the argument that persists among MAiD opponents, For a broader discussion on the ethics of VSED and how it compares to MAiD, see Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [26] Id.; see also David N. Hoffman and Judy Schwarz, Can Patients Choose to Stop Eating–Even If They Have Dementia–and Can Health Care Facilities Get Paid for Taking Care of Them? Ethics and Reimbursement at the End of Life (Am. Health L. Ass’n Conf. on Long Term Care and the Law 2020). [27] Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY St. Bar Assoc. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/. [28] Id. [29] CDR still does not appear to have articulated a position on VSED. CDR is a major and vocal opponent of MAiD legislation in NY with considerable resources (they state their projected 2010 budget was approximately $29,000,000). About Us, Center for Disability Rights, https://cdrnys.org/about/. [30] Vacco v. Quill, 521 U.S. 793 (1997) (holding that there is no equal protection violation when N.Y. law criminalized assisted-suicide but permitted removal of life-support systems). [31] Health Law Section: Duties, Rights & the Law at the End of Life (2019), supra note 5. [32] Id. [33] Id. [34] Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (providing evidence that “that people with disabilities, and disability rights organizations, have diverse views on the question of whether assisted dying should be legal”). https://doi.org/10.1111/bioe.13036 [35] Us for Autonomy, https://www.usforautonomy.org (last visited Sep 10, 2023); see also, Kathryn L. Tucker, Building Bridges Between the Civil Rights Movements of People with Disabilities and Those with Terminal Illness, 78 U. of Pitt. L. Rev. 329 (2017) (collecting and describing amici participation by disability advocates supporting end-of-life liberty). https://doi.org/10.5195/lawreview.2017.473 [36] E.g., USA/National Public Opinion Survey, Susquehanna Polling & Research, Inc. (Feb. 2023),https://d31hzlhk6di2h5.cloudfront.net/20230307/2e/9e/21/14/d37db7887f3f349202ae6f31/Raben_Crosstabulation_Report_2023.FINAL%20(1).pdf ).

Most states have adopted conscience clauses since the Roe v. Wade paradigm in the 1970s; however, not all clauses are respective to pharmacists. The purpose of this report is to quantify the presence of conscientious objection among US states with respect to pharmacist’s right to refuse to dispense. Fifty Boards of Pharmacy administrative codes were consulted for review. If Web sites were ambiguous or undeterminable, E-mail requests were sent on active legislation per National Association of Boards of Pharmacy contact information. Eleven states have conscience clauses present in their pharmacy administrative code—nearly double than last published in 2006. Requirements vary throughout the states including drug-specific limitations, requirement in writing, or notification in advance. Some states alternatively require duty to dispense. Less than one-fourth of United States boards of pharmacy provide a conscience clause or similar intended language in laws or policies. Within those states, pharmacists have a right to refuse to perform certain services based on religious, ethical, or moral objections. Imprecise language throughout the nation allows the rights to vary widely.

Photo by Cecilie Johnsen on Unsplash INTRODUCTION Across the country, states are enacting legislation that curtails LGBTQ+ rights and liberties.[1] In March 2021, Arkansas enacted Senate Bill 289, titled the Medical Ethics and Diversity Act (the “Act”).[2] The Act permits medical practitioners, healthcare institutions, and insurance companies to refuse to treat, or, in the case of insurance companies, to cover, a non-critically ill person if treating the individual violates their religious or personal beliefs. Though masked as protecting religious liberties, the Act discriminates against LGBTQ+ patients. While the Act purports to protect different types of healthcare workers, I frame my discussion of the Act to discuss the physician’s obligations given the changes to Arkansas law. Even if legally permissible, I believe virtuous physicians do not consider patients’ sexual orientation or gender identity when deciding whether to treat them. I will explain why a virtuous physician would never conscientiously object to treating a patient based on the patient’s sexual orientation or gender identity, even if allowed, like in Arkansas. Conscientious objection based on sexual orientation or gender identity, even if permitted under state law, is always unvirtuous. l. Senate Bill 289 and the LGBTQ+ Patient On March 29, 2021, Governor Hutchinson adopted the Act by signing Senate Bill 289 into Arkansas state law. To protect a “right of conscience” in health care, the Act invokes traditions of the United States and the Hippocratic Oath, stating: [t]he right of conscience was central to the founding of the United States, has been deeply rooted in the history and tradition of the United States for centuries, and has been central to the practice of medicine through the Hippocratic Oath for millennia. As used in the Act, conscience means “religious, moral, or ethical beliefs.” The Act protects medical practitioners, healthcare institutions, or healthcare payors when they act from their conscience and extends this protection to include the following: (1) the right not to participate in a healthcare service that violates his, her, or its conscience; (2) no requirement to participate in a healthcare service that violates his, her, or its conscience; and (3) no civil, criminal, or administrative liability for declining to participate in a healthcare service that violates his, her, or its conscience. The Act limits which services physicians can refuse to perform: it permits conscientious objection only if the patient requires non-emergency care. Under Arkansas state law, an emergency is defined as an “immediate threat to the life or health of a patient.”[3] Before the Act, conscientious objection was limited in medical practice in the United States. The American Medical Association’s (“AMA”) Code of Medical Ethics states physicians can act as moral agents. The AMA’s code supports conscientious objection if it is based on a moral objection to a treatment rather than discrimination against patients.[4] From the Church Amendments to the Affordable Care Act, federal law has protected practitioners’ rights to object to participating in treatments contrary to their religious or moral beliefs, such as abortions, sterilization, euthanasia, or physician-assisted suicide.[5] However, the language of these laws emphasizes treatment-based objection; the laws protect healthcare workers who are unwilling to participate in medical practices based on a moral objection to a treatment. In addition, the laws specifically name procedures like sterilization, euthanasia, or physician-assisted suicide as permissible grounds for objection. The Act extends physicians’ rights to conscientious objection by removing the treatment-specific language. In Arkansas, the broad language of the law could permit conscientious objection based on a patient’s LGBTQ+ identity because it does not limit objections based on type of treatments. The Act broadened conscientious objection in Arkansas to include treatment-based and patient-based objections. ll. Virtue Ethics Virtue ethics is an ethical framework that focuses on the character of the individual performing actions during the individual’s life and career. In Nicomachean Ethics, Aristotle writes that virtue is a state of being, such as a courageous or amiable person, rather than a system for ethical action selection.[6] Society understands these virtues as falling at the mean—or between— a deficiency and an excess. For example, the virtue of courage lies between the deficiency of cowardness and excess of rashness, never in abundance or excess. A virtuous person exemplifies the virtues required of the person’s role and performs the required functions well. Aristotle writes, “[w]e become just by doing just actions, temperate by doing temperate actions, brave by doing brave actions.” In this way, we must live our virtues to become virtuous. A. The Virtuous Physician The virtuous physician exemplifies virtue and practices medicine in congruence with medicine’s ethos. Since an individual can practice and learn virtue, it provides a unique ethical framework to distinguish between the virtuous or “good” physician and the unvirtuous or “bad” physician. Aristotle writes that life’s virtues are courage, temperance, generosity, magnificence, magnanimity, mildness, amiability, truthfulness, wit, and shame.[7] Individuals possessing these traits are virtuous, but virtuous physicians must also demonstrate traits integral to their professional duties. A virtuous physician’s qualities include empathetic listening, emotional sensitivity, and respect for patients. These additional qualities create trust and comfort patients.[8] Also, the virtuous physician exemplifies trustworthiness, integrity, discernment, compassion, patience, and conscientiousness.[9] Others even include theological virtues such as faith, hope, and charity as important characteristics in a physician’s practice.[10] While not an exhaustive list of the values that compose a virtuous physician, these standards are the basic requirements for physician to exemplify virtue and perform the job’s functions well. One may argue that theological virtues like faith, hope, and charity support the conscientious objection because physicians are virtuous when they are faithful, or loyal to their religious beliefs. However, this argument fails to consider the four principles of medical ethics. Using conscientious objection to withhold care from even non-critically ill patients can cause harm that is physical and emotional. A physician cannot act virtuously and simultaneously undermine non-malfeasance and beneficence. The virtuous physician must also practice medicine in congruence with medicine’s ethos, acting for the patient’s benefit and taking a patient-centered approach. The patient’s benefit has multiple elements, such as the medically defined good outcome, the patient’s definition of a good outcome, what is dignifying to the patient, and what is considered universally good.[11] If a physician acts against a patient’s good or the physician does not exemplify virtue in their own life, the physician would be considered unvirtuous. B. Unvirtuous Conscientious Objection Through the Act Conscientious objection is a debated topic. Some argue that physicians’ values should not influence the care they provide.[12] In addition, the legalization of conscientious objection is seen by some to violate medicine’s central ethos of caring for the patient.[13] Others do not view conscientious objection as wholly wrong. Despite the debate over the role of conscientious objection in the physician’s practice, conscientious objection based on a patient’s LGBTQ+ identity under the Act is unvirtuous. The Act extends the understood norm of treatment-based objections to objections based on any component of health care, including a patient’s LGBTQ+ identity. This patient-based objection is discriminatory and unrelated to the patient’s requested medical service which may conflict with the physician’s morals.[14] A virtuous physician would never refuse to treat a patient based on the patient’s race, color, religion, sex, sexual orientation, gender identity, or national origin. Refusing to treat a patient because of the patient’s LGBTQ+ identity is unvirtuous because it defies a physician’s duty, is discriminatory, and displays a lack of respect for patients, amiability, and compassion. Even if permitted under the Act, a virtuous physician must never object to treating a patient based on the patient’s sexual orientation or gender identity. One may argue a physician can be virtuous while conscientiously objecting if the physician clearly communicates all limitations and refers the patient to another medical provider. This is the American College of Obstetricians and Gynecologists’ view.[15] Under this view, physicians maintain respect for themselves as agents but ultimately provide proper care for the patient, even if their hands do not perform the service. However, to be virtuous, this objection must never be discriminatory. Even with prerequisites, objection based on gender identity and sexual orientation is discriminatory and indicates deficiencies in the physician’s virtue. The simple act of objection can cause psychological pain to a patient. LGBTQ+-based discrimination and rejection causes unnecessary physiological harm like anxiety, depression, and suicidal ideations, whereas social acceptance increases feelings of self-esteem.[16] The virtuous physician would never cause pain to the patient, as this violates the principle of non-maleficence. Regardless of actions taken before or after the objection, a physician is unvirtuous when the physician inflicts pain on a patient by conscientiously objecting to treating the patient based on LGBTQ+ status. CONCLUSION To avoid discrimination, a physician must have a valid reason for employing conscientious objection. The Medical Ethics and Diversity Act extends physicians’ rights from treatment-based objection to patient-based objection. Arkansas’s LGBTQ+ community is at risk of suffering from discriminatory healthcare practices. The physician who objects based on LGBTQ+ identity is unvirtuous because the physician’s action causes psychological harm to the patient, displays deficiencies in virtues, and opposes the central ethos of medicine. - [1] For examples of Senators and State Representatives passing laws affecting LGBTQ+ rights to protect religious liberties and fairness, see ACLU. (2021). Legislation Affecting LGBTQ Rights Across the Country 2021. https://www.aclu.org/legislation-affecting-lgbtq-rights-across-country-2021 [2] Medical Ethics and Diversity Act, Ark. Acts 462 §§17-80-501-06 (2021). https://www.arkleg.state.ar.us/Acts/FTPDocument?path=%2FACTS%2F2021R%2FPublic%2F&file=462.pdf&ddBienniumSession=2021%2F2021R [3] Emergency Medical Care Act, Ark. A.C.A. § 20-9-309 [4] AMA. (n.d.) Physician Exercise of Conscience. https://www.ama-assn.org/delivering-care/ethics/physician-exercise-conscience [5] U.S. Department of Health and Human Services (2021). Your Conscience Rights. https://www.hhs.gov/conscience/conscience-protections/index.html [6] Aristotle. (1999). Nicomachean Ethics. (Irwin, 2nd ed.). Hackett Publishing Company, Inc. [7]Aristotle. (1999). Nicomachean Ethics. (Irwin, 2nd ed.). Hackett Publishing Company, Inc. [8] Bain, L. E. (2018). Revisiting the need for virtue in medical practice: a reflection upon the teaching of Edmund Pellegrino. Philosophy, Ethics, and Humanities in Medicine, 13(1), 4. https://doi.org/10.1186/s13010-018-0057-0 [9] Gardiner, P. (2003). A virtue ethics approach to moral dilemmas in medicine. Journal of Medical Ethics, 29(5), 297-302. https://doi.org/10.1136/jme.29.5.297 [10] Toon, P. D. (1999). Towards a philosophy of general practice: a study of the virtuous practitioner. Occasional Paper Royal College of General Practitioners, (78), iii-vii, 1-69. [11] Shelp, E. E. E., & Pellegrino, D. (1985). The Virtuous Physician and the Ethics of Medicine Virtue and medicine explorations in the character of medicine, 17, 237-255. [12] Savulescu, J. (2006). Conscientious objection in medicine. BMJ, 332(7536), 294-297. https://doi.org/10.1136/bmj.332.7536.294 [13] Stahl, R. Y., & Emanuel, E. J. (2017). Physicians, Not Conscripts - Conscientious Objection in Health Care. New England Journal of Medicine, 376(14), 1380-1385. https://doi.org/10.1056/NEJMsb1612472 [14] Reis-Dennis, S., & Brummett, A. L. (2021). Are conscientious objectors morally obligated to refer? Journal of Medical Ethics, medethics-2020-107025. https://doi.org/10.1136/medethics-2020-107025 [15] ACOG. The limits of conscientious refusal in Reproductive Medicine. (n.d.). Retrieved September 12, 2022, from https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2007/11/the-limits-of-conscientious-refusal-in-reproductive-medicine [16] Meanley, S., Flores, D. D., Listerud, L., Chang, C. J., Feinstein, B. A., & Watson, R. J. (2021). The interplay of familial warmth and LGBTQ+ specific family rejection on LGBTQ+ adolescents' self-esteem. Journal of Adolescent Health, 93, 40-52. https://doi.org/10.1016/j.adolescence.2021.10.002 ; Ruben, M. A., Livingston, N. A., Berke, D. S., Matza, A. R., & Shipherd, J. C. (2019). Lesbian, Gay, Bisexual, and Transgender Veterans' Experiences of Discrimination in Health Care and Their Relation to Health Outcomes: A Pilot Study Examining the Moderating Role of Provider Communication. Health Equity, 3(1), 480-488. https://doi.org/10.1089/heq.2019.0069. ; Sutter, M., & Perrin, P. B. (2016). Discrimination, mental health, and suicidal ideation among LGBTQ people of color. Journal of Counseling Psychology, 63(1), 98-105. https://doi.org/10.1037/cou0000126

In Australia the “intimacy” of citizenship (Berlant 2), is often used to reinforce subscription to heteronormative romantic and familial structures. Because this framing promotes discourses of moral failure, recent political attention to sexuality and same-sex couples can be filtered through insights into coalitional affiliations. This paper uses contemporary shifts in Australian politics and culture to think through the concept of coalition, and in particular to analyse connections between sexuality and governmentality (or more specifically normative bias and same-sex relationships) in what I’m calling post-coalitional Australia. Against the unpredictability of changing parties and governments, allegiances and alliances, this paper suggests the continuing adherence to a heteronormatively arranged public sphere. After the current Australian Prime Minister Julia Gillard deposed the previous leader, Kevin Rudd, she clung to power with the help of independents and the Greens, and clichés of a “rainbow coalition” and a “new paradigm” were invoked to describe the confused electorate and governmental configuration. Yet in 2007, a less confused Australia decisively threw out the Howard–led Liberal and National Party coalition government after eleven years, in favour of Rudd’s own rainbow coalition: a seemingly invigorated party focussed on gender equity, Indigenous Australians, multi-cultural visibility, workplace relations, Austral-Asian relations, humane refugee processing, the environment, and the rights and obligations of same-sex couples. A post-coalitional Australia invokes something akin to “aftermath culture” (Lambert and Simpson), referring not just to Rudd’s fall or Howard’s election loss, but to the broader shifting contexts within which most Australian citizens live, and within which they make sense of the terms “Australia” and “Australian”. Contemporary Australia is marked everywhere by cracks in coalitions and shifts in allegiances and belief systems – the Coalition of the Willing falling apart, the coalition government crushed by defeat, deposed leaders, and unlikely political shifts and (re)alignments in the face of a hung parliament and renewed pushes toward moral and cultural change. These breakdowns in allegiances are followed by swift symbolically charged manoeuvres. Gillard moved quickly to repair relations with mining companies damaged by Rudd’s plans for a mining tax and to water down frustration with the lack of a sustainable Emissions Trading Scheme. And one of the first things Kevin Rudd did as Prime Minister was to change the fittings and furnishings in the Prime Ministerial office, of which Wright observed that “Mr Howard is gone and Prime Minister Kevin Rudd has moved in, the Parliament House bureaucracy has ensured all signs of the old-style gentlemen's club… have been banished” (The Age, 5 Dec. 2007). Some of these signs were soon replaced by Ms. Gillard herself, who filled the office in turn with memorabilia from her beloved Footscray, an Australian Rules football team. In post-coalitional Australia the exile of the old Menzies’ desk and a pair of Chesterfield sofas works alongside the withdrawal of troops from Iraq and renewed pledges for military presence in Afghanistan, apologising to stolen generations of Indigenous Australians, the first female Governor General, deputy Prime Minister and then Prime Minister (the last two both Gillard), the repealing of disadvantageous workplace reform, a focus on climate change and global warming (with limited success as stated), a public, mandatory paid maternity leave scheme, changes to the processing and visas of refugees, and the amendments to more than one hundred laws that discriminate against same sex couples by the pre-Gillard, Rudd-led Labor government. The context for these changes was encapsulated in an announcement from Rudd, made in March 2008: Our core organising principle as a Government is equality of opportunity. And advancing people and their opportunities in life, we are a Government which prides itself on being blind to gender, blind to economic background, blind to social background, blind to race, blind to sexuality. (Rudd, “International”) Noting the political possibilities and the political convenience of blindness, this paper navigates the confusing context of post-coalitional Australia, whilst proffering an understanding of some of the cultural forces at work in this age of shifting and unstable alliances. I begin by interrogating the coalitional impulse post 9/11. I do this by connecting public coalitional shifts to the steady withdrawal of support for John Howard’s coalition, and movement away from George Bush’s Coalition of the Willing and the War on Terror. I then draw out a relationship between the rise and fall of such affiliations and recent shifts within government policy affecting same-sex couples, from former Prime Minister Howard’s amendments to The Marriage Act 1961 to the Rudd-Gillard administration’s attention to the discrimination in many Australian laws. Sexual Citizenship and Coalitions Rights and entitlements have always been constructed and managed in ways that live out understandings of biopower and social death (Foucault History; Discipline). The disciplining of bodies, identities and pleasures is so deeply entrenched in government and law that any non-normative claim to rights requires the negotiation of existing structures. Sexual citizenship destabilises the post-coalitional paradigm of Australian politics (one of “equal opportunity” and consensus) by foregrounding the normative biases that similarly transcend partisan politics. Sexual citizenship has been well excavated in critical work from Evans, Berlant, Weeks, Richardson, and Bell and Binnie’s The Sexual Citizen which argues that “many of the current modes of the political articulation of sexual citizenship are marked by compromise; this is inherent in the very notion itself… the twinning of rights with responsibilities in the logic of citizenship is another way of expressing compromise… Every entitlement is freighted with a duty” (2-3). This logic extends to political and economic contexts, where “natural” coalition refers primarily to parties, and in particular those “who have powerful shared interests… make highly valuable trades, or who, as a unit, can extract significant value from others without much risk of being split” (Lax and Sebinius 158). Though the term is always in some way politicised, it need not refer only to partisan, multiparty or multilateral configurations. The subscription to the norms (or normativity) of a certain familial, social, religious, ethnic, or leisure groups is clearly coalitional (as in a home or a front, a club or a team, a committee or a congregation). Although coalition is interrogated in political and social sciences, it is examined frequently in mathematical game theory and behavioural psychology. In the former, as in Axelrod’s The Evolution of Cooperation, it refers to people (or players) who collaborate to successfully pursue their own self-interests, often in the absence of central authority. In behavioural psychology the focus is on group formations and their attendant strategies, biases and discriminations. Experimental psychologists have found “categorizing individuals into two social groups predisposes humans to discriminate… against the outgroup in both allocation of resources and evaluation of conduct” (Kurzban, Tooby and Cosmides 15387). The actions of social organisation (and not unseen individual, supposedly innate impulses) reflect the cultural norms in coalitional attachments – evidenced by the relationship between resources and conduct that unquestioningly grants and protects the rights and entitlements of the larger, heteronormatively aligned “ingroup”. Terror Management Particular attention has been paid to coalitional formations and discriminatory practices in America and the West since September 11, 2001. Terror Management Theory or TMT (Greenberg, Pyszczynski and Solomon) has been the main framework used to explain the post-9/11 reassertion of large group identities along ideological, religious, ethnic and violently nationalistic lines. Psychologists have used “death-related stimuli” to explain coalitional mentalities within the recent contexts of globalised terror. The fear of death that results in discriminatory excesses is referred to as “mortality salience”, with respect to the highly visible aspects of terror that expose people to the possibility of their own death or suffering. Naverette and Fessler find “participants… asked to contemplate their own deaths exhibit increases in positive evaluations of people whose attitudes and values are similar to their own, and derogation of those holding dissimilar views” (299). It was within the climate of post 9/11 “mortality salience” that then Prime Minister John Howard set out to change The Marriage Act 1961 and the Family Law Act 1975. In 2004, the Government modified the Marriage Act to eliminate flexibility with respect to the definition of marriage. Agitation for gay marriage was not as noticeable in Australia as it was in the U.S where Bush publicly rejected it, and the UK where the Civil Union Act 2004 had just been passed. Following Bush, Howard’s “queer moral panic” seemed the perfect decoy for the increased scrutiny of Australia’s involvement in the Iraq war. Howard’s changes included outlawing adoption for same-sex couples, and no recognition for legal same-sex marriages performed in other countries. The centrepiece was the wording of The Marriage Amendment Act 2004, with marriage now defined as a union “between a man and a woman to the exclusion of all others”. The legislation was referred to by the Australian Greens Senator Bob Brown as “hateful”, “the marriage discrimination act” and the “straight Australia policy” (Commonwealth 26556). The Labor Party, in opposition, allowed the changes to pass (in spite of vocal protests from one member) by concluding the legal status of same-sex relations was in no way affected, seemingly missing (in addition to the obvious symbolic and physical discrimination) the equation of same-sex recognition with terror, terrorism and death. Non-normative sexual citizenship was deployed as yet another form of “mortality salience”, made explicit in Howard’s description of the changes as necessary in protecting the sanctity of the “bedrock institution” of marriage and, wait for it, “providing for the survival of the species” (Knight, 5 Aug. 2003). So two things seem to be happening here: the first is that when confronted with the possibility of their own death (either through terrorism or gay marriage) people value those who are most like them, joining to devalue those who aren’t; the second is that the worldview (the larger religious, political, social perspectives to which people subscribe) becomes protection from the potential death that terror/queerness represents. Coalition of the (Un)willing Yet, if contemporary coalitions are formed through fear of death or species survival, how, for example, might these explain the various forms of risk-taking behaviours exhibited within Western democracies targeted by such terrors? Navarette and Fessler (309) argue that “affiliation defences are triggered by a wider variety of threats” than “existential anxiety” and that worldviews are “in turn are reliant on ‘normative conformity’” (308) or “normative bias” for social benefits and social inclusions, because “a normative orientation” demonstrates allegiance to the ingroup (308-9). Coalitions are founded in conformity to particular sets of norms, values, codes or belief systems. They are responses to adaptive challenges, particularly since September 11, not simply to death but more broadly to change. In troubled times, coalitions restore a shared sense of predictability. In Howard’s case, he seemed to say, “the War in Iraq is tricky but we have a bigger (same-sex) threat to deal with right now. So trust me on both fronts”. Coalitional change as reflective of adaptive responses thus serves the critical location of subsequent shifts in public support. Before and since September 11 Australians were beginning to distinguish between moderation and extremism, between Christian fundamentalism and productive forms of nationalism. Howard’s unwavering commitment to the American-led war in Iraq saw Australia become a member of another coalition: the Coalition of the Willing, a post 1990s term used to describe militaristic or humanitarian interventions in certain parts of the world by groups of countries. Howard (in Pauly and Lansford 70) committed Australia to America’s fight but also to “civilization's fight… of all who believe in progress and pluralism, tolerance and freedom”. Although Bush claimed an international balance of power and influence within the coalition (94), some countries refused to participate, many quickly withdrew, and many who signed did not even have troops. In Australia, the war was never particularly popular. In 2003, forty-two legal experts found the war contravened International Law as well as United Nations and Geneva conventions (Sydney Morning Herald 26 Feb. 2003). After the immeasurable loss of Iraqi life, and as the bodies of young American soldiers (and the occasional non-American) began to pile up, the official term “coalition of the willing” was quietly abandoned by the White House in January of 2005, replaced by a “smaller roster of 28 countries with troops in Iraq” (ABC News Online 22 Jan. 2005). The coalition and its larger war on terror placed John Howard within the context of coalitional confusion, that when combined with the domestic effects of economic and social policy, proved politically fatal. The problem was the unclear constitution of available coalitional configurations. Howard’s continued support of Bush and the war in Iraq compounded with rising interest rates, industrial relations reform and a seriously uncool approach to the environment and social inclusion, to shift perceptions of him from father of the nation to dangerous, dithery and disconnected old man. Post-Coalitional Change In contrast, before being elected Kevin Rudd sought to reframe Australian coalitional relationships. In 2006, he positions the Australian-United States alliance outside of the notion of military action and Western territorial integrity. In Rudd-speak the Howard-Bush-Blair “coalition of the willing” becomes F. Scott Fitzgerald’s “willingness of the heart”. The term coalition was replaced by terms such as dialogue and affiliation (Rudd, “Friends”). Since the 2007 election, Rudd moved quickly to distance himself from the agenda of the coalition government that preceded him, proposing changes in the spirit of “blindness” toward marginality and sexuality. “Fix-it-all” Rudd as he was christened (Sydney Morning Herald 29 Sep. 2008) and his Labor government began to confront the legacies of colonial history, industrial relations, refugee detention and climate change – by apologising to Aboriginal people, timetabling the withdrawal from Iraq, abolishing the employee bargaining system Workchoices, giving instant visas and lessening detention time for refugees, and signing the Kyoto Protocol agreeing (at least in principle) to reduce green house gas emissions. As stated earlier, post-coalitional Australia is not simply talking about sudden change but an extension and a confusion of what has gone on before (so that the term resembles postcolonial, poststructural and postmodern because it carries the practices and effects of the original term within it). The post-coalitional is still coalitional to the extent that we must ask: what remains the same in the midst of such visible changes? An American focus in international affairs, a Christian platform for social policy, an absence of financial compensation for the Aboriginal Australians who received such an eloquent apology, the lack of coherent and productive outcomes in the areas of asylum and climate change, and an impenetrable resistance to the idea of same-sex marriage are just some of the ways in which these new governments continue on from the previous one. The Rudd-Gillard government’s dealings with gay law reform and gay marriage exemplify the post-coalitional condition. Emulating Christ’s relationship to “the marginalised and the oppressed”, and with Gillard at his side, Rudd understandings of the Christian Gospel as a “social gospel” (Rudd, “Faith”; see also Randell-Moon) to table changes to laws discriminating against gay couples – guaranteeing hospital visits, social security benefits and access to superannuation, resembling de-facto hetero relationships but modelled on the administering and registration of relationships, or on tax laws that speak primarily to relations of financial dependence – with particular reference to children. The changes are based on the report, Same Sex, Same Entitlements (HREOC) that argues for the social competence of queer folk, with respect to money, property and reproduction. They speak the language of an equitable economics; one that still leaves healthy and childless couples with limited recognition and advantage but increased financial obligation. Unable to marry in Australia, same-sex couples are no longer single for taxation purposes, but are now simultaneously subject to forms of tax/income auditing and governmental revenue collection should either same-sex partner require assistance from social security as if they were married. Heteronormative Coalition Queer citizens can quietly stake their economic claims and in most states discreetly sign their names on a register before becoming invisible again. Mardi Gras happens but once a year after all. On the topic of gay marriage Rudd and Gillard have deferred to past policy and to the immoveable nature of the law (and to Howard’s particular changes to marriage law). That same respect is not extended to laws passed by Howard on industrial relations or border control. In spite of finding no gospel references to Jesus the Nazarene “expressly preaching against homosexuality” (Rudd, “Faith”), and pre-election promises that territories could govern themselves with respect to same sex partnerships, the Rudd-Gillard government in 2008 pressured the ACT to reduce its proposed partnership legislation to that of a relationship register like the ones in Tasmania and Victoria, and explicitly demanded that there be absolutely no ceremony – no mimicking of the real deal, of the larger, heterosexual citizens’ “ingroup”. Likewise, with respect to the reintroduction of same-sex marriage legislation by Greens senator Sarah Hanson Young in September 2010, Gillard has so far refused a conscience vote on the issue and restated the “marriage is between a man and a woman” rhetoric of her predecessors (Topsfield, 30 Sep. 2010). At the same time, she has agreed to conscience votes on euthanasia and openly declared bi-partisan (with the federal opposition) support for the war in Afghanistan. We see now, from Howard to Rudd and now Gillard, that there are some coalitions that override political differences. As psychologists have noted, “if the social benefits of norm adherence are the ultimate cause of the individual’s subscription to worldviews, then the focus and salience of a given individual’s ideology can be expected to vary as a function of their need to ally themselves with relevant others” (Navarette and Fessler 307). Where Howard invoked the “Judaeo-Christian tradition”, Rudd chose to cite a “Christian ethical framework” (Rudd, “Faith”), that saw him and Gillard end up in exactly the same place: same sex relationships should be reduced to that of medical care or financial dependence; that a public ceremony marking relationship recognition somehow equates to “mimicking” the already performative and symbolic heterosexual institution of marriage and the associated romantic and familial arrangements. Conclusion Post-coalitional Australia refers to the state of confusion borne of a new politics of equality and change. The shift in Australia from conservative to mildly socialist government(s) is not as sudden as Howard’s 2007 federal loss or as short-lived as Gillard’s hung parliament might respectively suggest. Whilst allegiance shifts, political parties find support is reliant on persistence as much as it is on change – they decide how to buffer and bolster the same coalitions (ones that continue to privilege white settlement, Christian belief systems, heteronormative familial and symbolic practices), but also how to practice policy and social responsibility in a different way. Rudd’s and Gillard’s arguments against the mimicry of heterosexual symbolism and the ceremonial validation of same-sex partnerships imply there is one originary form of conduct and an associated sacred set of symbols reserved for that larger ingroup. Like Howard before them, these post-coalitional leaders fail to recognise, as Butler eloquently argues, “gay is to straight not as copy is to original, but as copy is to copy” (31). To make claims to status and entitlements that invoke the messiness of non-normative sex acts and romantic attachments necessarily requires the negotiation of heteronormative coalitional bias (and in some ways a reinforcement of this social power). As Bell and Binnie have rightly observed, “that’s what the hard choices facing the sexual citizen are: the push towards rights claims that make dissident sexualities fit into heterosexual culture, by demanding equality and recognition, versus the demand to reject settling for heteronormativity” (141). The new Australian political “blindness” toward discrimination produces positive outcomes whilst it explicitly reanimates the histories of oppression it seeks to redress. The New South Wales parliament recently voted to allow same-sex adoption with the proviso that concerned parties could choose not to adopt to gay couples. The Tasmanian government voted to recognise same-sex marriages and unions from outside Australia, in the absence of same-sex marriage beyond the current registration arrangements in its own state. In post-coalitional Australia the issue of same-sex partnership recognition pits parties and allegiances against each other and against themselves from within (inside Gillard’s “rainbow coalition” the Rainbow ALP group now unites gay people within the government’s own party). Gillard has hinted any new proposed legislation regarding same-sex marriage may not even come before parliament for debate, as it deals with real business. Perhaps the answer lies over the rainbow (coalition). As the saying goes, “there are none so blind as those that will not see”. References ABC News Online. “Whitehouse Scraps Coalition of the Willing List.” 22 Jan. 2005. 1 July 2007 ‹http://www.abc.net.au/news/newsitems/200501/s1286872.htm›. Axelrod, Robert. The Evolution of Cooperation. New York: Basic Books, 1984. Berlant, Lauren. The Queen of America Goes to Washington City: Essays on Sex and Citizenship. Durham: Duke University Press, 1997. Bell, David, and John Binnie. The Sexual Citizen: Queer Politics and Beyond. Cambridge, England: Polity, 2000. Butler, Judith. Gender Trouble: Feminism and the Subversion of Identity. New York: Routledge, 1990. Commonwealth of Australia. Parliamentary Debates. House of Representatives 12 Aug. 2004: 26556. (Bob Brown, Senator, Tasmania.) Evans, David T. Sexual Citizenship: The Material Construction of Sexualities. London: Routledge, 1993. Foucault, Michel. Discipline and Punish: The Birth of the Prison. Trans. A. Sheridan. London: Penguin, 1991. ———. The Will to Knowledge: The History of Sexuality. Vol. 1. Trans. Robert Hurley. London: Penguin, 1998. Greenberg, Jeff, Tom Pyszczynski, and Sheldon Solomon. “The Causes and Consequences of the Need for Self-Esteem: A Terror Management Theory.” Public Self, Private Self. Ed. Roy F. Baumeister. New York: Springer-Verlag, 1986. 189-212. Human Rights and Equal Opportunity Commission. Same-Sex: Same Entitlements Report. 2007. 21 Aug. 2007 ‹http://www.hreoc.gov.au/human_rights/samesex/report/index.html›. Kaplan, Morris. Sexual Justice: Democratic Citizenship and the Politics of Desire. New York: Routledge, 1997. Knight, Ben. “Howard and Costello Reject Gay Marriage.” ABC Online 5 Aug. 2003. Kurzban, Robert, John Tooby, and Leda Cosmides. "Can Race Be Erased? Coalitional Computation and Social Categorization." Proceedings of the National Academy of Sciences 98.26 (2001): 15387–15392. Lambert, Anthony, and Catherine Simpson. "Jindabyne’s Haunted Alpine Country: Producing (an) Australian Badland." M/C Journal 11.5 (2008). 20 Oct. 2010 ‹http://journal.media-culture.org.au/index.php/mcjournal/article/view/81›. Lax, David A., and James K. Lebinius. “Thinking Coalitionally: Party Arithmetic Process Opportunism, and Strategic Sequencing.” Negotiation Analysis. Ed. H. Peyton Young. Michigan: University of Michigan Press, 1991. 153-194. Naverette, Carlos, and Daniel Fessler. “Normative Bias and Adaptive Challenges: A Relational Approach to Coalitional Psychology and a Critique of Terror Management Theory.” Evolutionary Psychology 3 (2005): 297-325. Pauly, Robert J., and Tom Lansford. Strategic Preemption: US Foreign Policy and Second Iraq War. Aldershot: Ashgate, 2005. Randall-Moon, Holly. "Neoliberal Governmentality with a Christian Twist: Religion and Social Security under the Howard-Led Australian Government." Eds. Michael Bailey and Guy Redden. Mediating Faiths: Religion and Socio- Cultural Change in the Twenty-First Century. Farnham: Ashgate, in press. Richardson, Diane. Rethinking Sexuality. London: Sage, 2000. Rudd, Kevin. “Faith in Politics.” The Monthly 17 (2006). 31 July 2007 ‹http://www.themonthly.com.au/monthly-essays-kevin-rudd-faith-politics--300›. Rudd, Kevin. “Friends of Australia, Friends of America, and Friends of the Alliance That Unites Us All.” Address to the 15th Australian-American Leadership Dialogue. The Australian, 24 Aug. 2007. 13 Mar. 2008 ‹http://www.theaustralian.com.au/national-affairs/climate/kevin-rudds-address/story-e6frg6xf-1111114253042›. Rudd, Kevin. “Address to International Women’s Day Morning Tea.” Old Parliament House, Canberra, 11 Mar. 2008. 1 Oct. 2010 ‹http://pmrudd.archive.dpmc.gov.au/node/5900›. Sydney Morning Herald. “Coalition of the Willing? Make That War Criminals.” 26 Feb. 2003. 1 July 2007 ‹http://www.smh.com.au/articles/2003/02/25/1046064028608.html›. Topsfield, Jewel. “Gillard Rules Out Conscience Vote on Gay Marriage.” The Age 30 Sep. 2010. 1 Oct. 2010 ‹http://www.theage.com.au/national/gillard-rules-out-conscience-vote-on-gay-marriage-20100929-15xgj.html›. Weeks, Jeffrey. "The Sexual Citizen." Theory, Culture and Society 15.3-4 (1998): 35-52. Wright, Tony. “Suite Revenge on Chesterfield.” The Age 5 Dec. 2007. 4 April 2008 ‹http://www.theage.com.au/news/national/suite-revenge-on-chesterfield/2007/12/04/1196530678384.html›.

Photo ID 158378414 © Eduard Muzhevskyi | Dreamstime.com ABSTRACT There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities. INTRODUCTION Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve. BACKGROUND Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes.[1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research.[2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.”[3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops.[4] Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture. I. Global Cultural Perspective of Embryonic Stem Cells Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense,[5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research.[6] Consequently, global engagement in ESC research depends on social-cultural acceptability. a. US and Rights-Based Cultures In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism,[7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.”[8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed.[9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field.[10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture.[11] b. Ubuntu and Collective Cultures African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama, which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,”[12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth.[13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value.[14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society. Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.”[15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail. Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable.[16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus[17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines.[18] Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim.[19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research.[20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF. Their use is conditioned on consent, and available only to married couples.[21] The community's receptiveness to stem cell research depends on including communitarian African ethics. c. Asia Some Asian countries also have a collective model of ethics and decision making.[22] In China, the ethics model promotes a sincere respect for life or human dignity,[23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life.[25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research.[26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions.[27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency.[28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021.[29] However, issues still need to be addressed in implementing effective IRB review and approval procedures. The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy,[30] research ethics should also adapt to ensure respect for the values of its represented peoples. Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies.[31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells.[32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval,[33] and in another instance, the oocyte source was unclear and possibly violated ethical standards.[34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust. d. Middle East Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells,[35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research.[36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors.[37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so.[38] Jordan has a positive research ethics culture.[39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial.[40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation.[41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.”[42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes. e. Europe In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected.[43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44] For example, in Germany, Lebenzusammenhang, or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.”[45] Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount.[46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007.[47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization.[48] Spain’s approach differs still, with a comprehensive regulatory framework.[49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility.[50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices.[51] II. Religious Perspectives on ESC Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives. The Qur'an states: “And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.”[52] Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception.[53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible.[54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research.[55] In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided.[56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden.[57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all.[58] Acceptance varies on applied beliefs and interpretations. Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero,[59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all.[60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime.[61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit.[62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets.[63] Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life.[64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception:[65] “If she is found pregnant, until the fortieth day it is mere fluid,”[66] Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation.[67] Stem cell research is accepted due to application of these religious laws. We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory, which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions.[68] We only wish to show that the interaction with morality varies between cultures and countries. III. A Flexible Ethical Approach The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities. While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe.[69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation. For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent.[70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context,[71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders. This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research. Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values.[72] An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions.[73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion. IV. Concerns Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values.[74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions. Other concerns include medical tourism, which may promote health inequities.[75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments.[76] For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.”[77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices.[78] The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.”[79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds.[80] CONCLUSION While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research. For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society. This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model. - [1] Poliwoda, S., Noor, N., Downs, E., Schaaf, A., Cantwell, A., Ganti, L., Kaye, A. D., Mosel, L. I., Carroll, C. B., Viswanath, O., & Urits, I. (2022). Stem cells: a comprehensive review of origins and emerging clinical roles in medical practice. 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[14] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324 [15] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324 [16] Jackson, C.S., Pepper, M.S. Opportunities and barriers to establishing a cell therapy programme in South Africa. Stem Cell Res Ther 4, 54 (2013). https://doi.org/10.1186/scrt204; Pew Research Center. (2014, May 1). Public health a major priority in African nations. Pew Research Center’s Global Attitudes Project. https://www.pewresearch.org/global/2014/05/01/public-health-a-major-priority-in-african-nations/ [17] Department of Health Republic of South Africa. (2021). Health Research Priorities (revised) for South Africa 2021-2024. 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Journal of law and the biosciences, 8(1). https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199 [30] Chen, H., Wei, T., Wang, H. et al. Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017. BMC Public Health 22, 434 (2022). https://doi.org/10.1186/s12889-022-12839-0 [31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan. Curr Stem Cell Rep 1, 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6 [32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production. NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production [33] Park, S. (2012). South Korea steps up stem-cell work. Nature. https://doi.org/10.1038/nature.2012.10565 [34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned. Accountability in research, 13(1), 101–109. https://doi.org/10.1080/08989620600634193. [35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 [36]Association for the Advancement of Blood and Biotherapies. https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia [37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 [38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6 Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics, 23(3), 260–268. https://doi.org/10.1111/dewb.12355; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know. Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know [39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics. Research Ethics, 17(2), 228-241. https://doi.org/10.1177/1747016120966779 [40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics. Research Ethics, 17(2), 228-241. https://doi.org/10.1177/1747016120966779 [41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3 [44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France. Biotechnology Law Report, 32(6), 349–356. https://doi.org/10.1089/blr.2013.9865 [45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3 [46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf [47] Regulation of Stem Cell Research in Germany. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany [48] Regulation of Stem Cell Research in Finland. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland [49] Regulation of Stem Cell Research in Spain. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain [50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered: Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110. Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ... Revista do Colegio Brasileiro de Cirurgioes, 41(5), 374–377. https://doi.org/10.1590/0100-69912014005013 Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India. Routledge. For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe. Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe [51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights. Cultura (Iasi, Romania), 14(2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent? Research Ethics, 13(1), 23-41. https://doi.org/10.1177/1747016116650235 [52] The Qur'an (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23 [53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life. Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/ [54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics, 31:399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386 [55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association, 12(4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf. [56] Sivaraman, M. & Noor, S. (2017). Ethics of embryonic stem cell research according to Buddhist, Hindu, Catholic, and Islamic religions: perspective from Malaysia. Asian Biomedicine,8(1) 43-52. https://doi.org/10.5372/1905-7415.0801.260 [57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation. Journal of Religion and Health, 30(1), 35–41. http://www.jstor.org/stable/27510629; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva. A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm [59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. ((King James Bible. (1999). Oxford University Press. (original work published 1769)) Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…” In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David. Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…” These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth. [60] It should be noted that abortion is not supported as well. [61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day. Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html [62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells. Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology. Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf. [63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed. Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/ [64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society, (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law). Journal of assisted reproduction and genetics, 25(6), 271–276. https://doi.org/10.1007/s10815-008-9221-6 [66] Ruttenberg, D. (2020, May 5). The Torah of Abortion Justice (annotated source sheet). Sefaria. https://www.sefaria.org/sheets/234926.7?lang=bi&with=all&lang2=en [67] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.), Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues (pp. 79-94). Berkeley: University of California Press. https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005 [68] Gert, B. (2007). Common morality: Deciding what to do. Oxford Univ. Press. [69] World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 Declaration of Helsinki – WMA – The World Medical Association.; see also: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. U.S. Department of Health and Human Services. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html [70] Zakarin Safier, L., Gumer, A., Kline, M., Egli, D., & Sauer, M. V. (2018). Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes. Journal of assisted reproduction and genetics, 35(7), 1219–1225. https://doi.org/10.1007/s10815-018-1171-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063839/ see also: Riordan, N. H., & Paz Rodríguez, J. (2021). Addressing concerns regarding associated costs, transparency, and integrity of research in recent stem cell trial. Stem Cells Translational Medicine, 10(12), 1715–1716. https://doi.org/10.1002/sctm.21-0234 [71] Klitzman, R., & Sauer, M. V. (2009). Payment of egg donors in stem cell research in the USA. Reproductive biomedicine online, 18(5), 603–608. https://doi.org/10.1016/s1472-6483(10)60002-8 [72] Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, M. L. (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa. Clinical trials (London, England), 3(3), 306–313. https://doi.org/10.1191/1740774506cn150oa [73] Veatch, Robert M. Hippocratic, Religious, and Secular Medical Ethics: The Points of Conflict. Georgetown University Press, 2012. [74] Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity. Research Ethics, 14(3), 1-17. https://doi.org/10.1177/1747016117739939 [75] Pirzada, N. (2022). The Expansion of Turkey’s Medical Tourism Industry. Voices in Bioethics, 8. https://doi.org/10.52214/vib.v8i.9894 [76] Stem Cell Tourism: False Hope for Real Money. Harvard Stem Cell Institute (HSCI). (2023). https://hsci.harvard.edu/stem-cell-tourism, See also: Bissassar, M. (2017). Transnational Stem Cell Tourism: An ethical analysis. Voices in Bioethics, 3. https://doi.org/10.7916/vib.v3i.6027 [77]Song, P. (2011) The proliferation of stem cell therapies in post-Mao China: problematizing ethical regulation, New Genetics and Society, 30:2, 141-153, DOI: 10.1080/14636778.2011.574375 [78] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East. Nature 510, 189. https://doi.org/10.1038/510189a [79] International Society for Stem Cell Research. (2024). Standards in stem cell research. International Society for Stem Cell Research. https://www.isscr.org/guidelines/5-standards-in-stem-cell-research [80] Benjamin, R. (2013). People’s science bodies and rights on the Stem Cell Frontier. Stanford University Press.

Photo by Alexander Grey on Unsplash ABSTRACT Current studies show that about half of transgender and gender-diverse (TGD) people wish to have children in the future. TGD patients who pursue gender-affirmation interventions must be aware of the impact that various treatments can have on fertility, as gender-affirming care through medical or surgical treatment can limit or alter reproductive potential. Many medical professional societies encourage providers to educate and counsel patients about the consequences of treatment and viable options for fertility preservation (FP) as early as possible, though patients may not be aware of all the family formation methods available. There is a significant need for a tool that thoroughly details not only the various opportunities for parenthood but the perceived cost, rates of success, and risks associated with each option. A fertility decision-aid would allow for a more robust informed consent process and shared decision-making for all individuals pursuing gender-affirming care. INTRODUCTION Over 1.6 million adults and youth in the United States, or about 0.6 percent of those age 13 and over, identify as transgender, according to a report released by The Williams Institute in June 2022.[1] Current studies show that approximately half of transgender and gender-diverse (TGD) people wish to have children in the future, which aligns with the rate of cisgender individuals who desire parenthood in some form.[2] Studies on parenthood show improved quality of life and mental health in TGD adults and decreased incidence of suicide in TGD women.[3] In one study, almost half of the TGD individuals who indicated an interest in parenthood said they wanted genetically related offspring.[4] However, medical or surgical therapies can limit reproductive potential.[5] Recent findings indicate that some TGD adults who underwent medical or surgical paths to affirmation regret decisions that may have led to their inability to have genetic children. Perhaps they did not know it was an option, faced barriers to care, or were not interested at the time.[6] Many medical professional societies, including the World Professional Association for Transgender Health (WPATH), the Endocrine Society, and the American College of Obstetrics and Gynecology, encourage providers to educate and counsel patients about the consequences of treatment and viable options for fertility preservation as early as possible.[7] This paper argues that TGD patients who pursue gender-affirmation interventions must be aware of the impact treatments can have on fertility and, ultimately, parenthood and that a design tool may help them understand the risks and make informed decisions. l. Gender Affirmation Options Some TGD individuals do not use medical or surgical therapies to feel affirmed in their identity.[8] Non-medical paths to affirmation include social and legal measures.[9] These reversible paths do not impact the individual’s future fertility potential. TGD individuals can follow different paths of gender-affirming care through social, legal, medical, and surgical affirmation.[10] Social affirmation can include using gender-affirming pronouns, names, and clothing.[11] Legal affirmation can include changing the gender and name on a birth certificate and other records in states where this is permissible.[12] Social and legal affirmations are reversible and do not impact fertility potential. Medical affirmation involves the use of gender-affirming hormone therapy. Feminizing or masculinizing hormone therapy allows for the development of secondary sex characteristics that more closely align with the individual's gender identity.[13] No set regimen for treatment exists, as a patient’s goals will determine their individualized plan.[14] Some standard feminizing agents include estrogen, androgen-reducing medications, and progestins, while the common masculinizing agent is testosterone.[15] Gender-affirming hormone therapy is not currently seen as a definitive cause of infertility, as it is possible to discontinue treatment and see a noted reversal of intended effects.[16] Research findings suggest that hormone therapy should stop for a minimum of three months to reverse any treatment effects.[17] The only available data on long-term hormonal therapy use is inconsistent, based on observational studies with varying duration and doses.[18] Individuals can stop gender-affirming hormone therapy, but its lasting impact on fertility is unknown.[19] A TGD individual may choose to undergo surgical interventions that do not impact fertility. These interventions can masculinize or feminize body parts to allow a patient’s physical appearance to align with their gender identity.[20] This care could include breast augmentation for TGD women and Adam’s apple reduction or breast reduction for TGD men.[21] Other surgical interventions will impact TGD individuals’ fertility. Genital surgery for a TGD woman can include the removal of the penis and scrotum (penectomy and orchiectomy) and the construction of a vagina and labia (vaginoplasty and valvuloplasty).[22] A TGD man can have removal of the ovaries and uterus (oophorectomy and hysterectomy) and construction of a penis and scrotum (metoidioplasty, phalloplasty, and scrotoplasty).[23] Following these gender-affirming surgeries, individuals are infertile due to the removal of their reproductive organs.[24] These procedures are irreversible and directly impact reproductive capacity in TGD individuals. ll. Fertility Counseling to Explain Paths to Parenthood Patients receiving gender-affirming care should have the opportunity to learn about the various ways to achieve parenthood, including fertility preservation. Family formation methods include sexual intercourse, artificial insemination, surrogacy, and adoption or foster care.[25] These methods apply to non-TGD people as well. Patients may not be aware of the various means of family-building, so accurate and expansive fertility counseling is essential before initiating medical or surgical affirming care. The frequency with which TGD individuals receive fertility counseling and how thorough it is, is unclear. When surveyed about fertility preservation, healthcare providers reported a lack of confidence in discussing fertility preservation with patients due to gaps in their knowledge on best practices, success rates, and regret rates in patients who did not preserve fertility. They also had varied perceptions of their role in treating patients and whether they should discuss family planning.[26] Patients have reported receiving an overview of fertility options from their primary transgender-healthcare providers before being referred to reproductive specialists.[27] While this is an essential step for patients seeking more information about their opportunities for parenthood, only 16 percent of Society for Assisted Reproductive Technology member clinics share information about options for transgender individuals on their websites.[28] Providers of transgender health care do not, and may not be trained to, provide adequate counsel to patients. Patients also cannot give informed consent for fertility or gender-affirming care interventions without more information on the benefits and burdens of all available treatments. Current literature demonstrates a need for a decision aid that thoroughly details not only the opportunities for parenthood but the perceived cost, rates of success, and risks associated with each option.[29] This tool could foster a more informed dialogue between an individual and their care team. A fertility decision aid would also allow for a more robust informed consent process for all individuals pursuing gender-affirming care. Regardless of the affirmation path chosen, a TGD individual should have early and frequent conversations with their care team regarding fertility. The World Professional Association for Transgender Health (WPATH) asserts that healthcare professionals should discuss fertility preservation options before initiating gender-affirming hormone therapy or surgery. The American College of Obstetrics and Gynecology states that “fertility and parenting desires should be discussed early in the process of transition, before the initiation of hormone therapy or gender affirmation surgery.”[30] The Endocrine Society writes that “all individuals seeking gender-affirming medical treatment should receive information and counsel on options for fertility preservation prior to initiating puberty suppression in adolescents and prior to treating with hormonal therapy in both adolescents and adults."[31] These conversations are essential even if the patient is not interested in parenthood at the time. WPATH addresses the potential for regret, as cases of individuals who received hormone therapy and genital surgery and later desired genetically related children have been identified.[32] TGD patients pursuing gender-affirming care should assess their individual fertility goals to better understand the many ways to build a family. Surveys of TGD adults show that participants want to become parents in various ways. In one study, 31.3 percent of those surveyed wanted to become parents through adoption, 25 percent wanted children through sexual intercourse, 15.6 percent through surrogacy, 12.5 percent using donor sperm, 9.4 percent using a known sperm donor, and 6.3 percent through the foster care system.[33] TGD women showed a significant interest in adoption (75 percent of participants), whereas more than half of TGD men wanted to become parents through sexual intercourse or pregnancy (58.3 percent).[34] These fertility goals should be acknowledged and discussed with the care team to guide decision-making about fertility preservation. lll. Fertility Preservation Individuals who wish to share their genetic makeup with their child will usually need to speak with a reproductive specialist about fertility preservation options. They are the same as those for cisgender individuals using fertility services before cancer treatment or elective preservation.[35] For TGD adults with ovaries, this includes freezing embryos (using donor or partner sperm) or ovarian tissue.[36] While no longer viewed as an experimental treatment, professionals offer tissue freezing to few patients due to a lack of data on its safety and efficacy.[37] For TGD adults with testicles, freezing sperm and preserving testicular tissue can preserve the ability to have biological children.[38] Fertility preservation numbers for TGD adults remain low. A study showed that 76.6 percent of TGD men and 76.1 percent of TGD women considered fertility preservation, but only 3.1 percent and 9.6 percent, respectively, initiated it.[39] Success rate, cost, need for travel, and elevated risk of gender dysphoria likely lead to lower use of fertility preservation.[40] According to the American Society for Reproductive Medicine, the average cost of an IVF cycle in the US is $12,400.[41] Intrauterine insemination can range in cost from a few hundred dollars to $2,000 per cycle.[42] There are also associated costs to freeze and store sperm and eggs.[43] Insurance coverage and physical location impact the costs and how the patient bears the costs.[44] For those who do not have sufficient or any insurance coverage, fertility preservation may not be feasible. Of additional significance for this population, fertility preservation techniques can exacerbate gender dysphoria as the patient must produce gametes associated with the gender they do not recognize.[45] For TGD women, masturbating in a clinical setting or sperm banking for sperm cryopreservation can cause severe distress.[46] Furthermore, fertility preservation for TGD men can be challenging and invasive. A transvaginal ultrasound exam is a requirement for the cryopreservation of embryos and oocytes.[47] This exam can cause significant distress as the procedure does not align with their male identity.[48] Controlled ovarian stimulation cycles require two weeks of daily gonadotropin injections, and the patient is given anesthesia for oocyte retrieval.[49] Furthermore, TGD men undergoing fertility preservation must discontinue testosterone use, and menstruation can resume.[50] lV. Other Paths to Parenthood a. Adoption TGD adults can also pursue parenthood through adoption systems, though foster care is a temporary option. While almost one-third of surveyed TGD adults consider adoption a means to parenthood, cost and fear of discrimination can prevent them from following through.[51] TGD individuals have expressed a reluctance to pursue adoption due to the fear of discrimination by adoption agencies, attorneys, or families.[52] Nineteen states in the US allow child welfare agencies to refuse to provide services to LGBTQ+ families if it conflicts with the religious beliefs of the relevant people in the agency.[53] Nineteen states have no laws about discrimination during the adoption process based on sexual orientation or gender identity.[54] Only 29 states have statutory or regulatory protections against discrimination based on orientation and gender identity.[55] b. Surrogacy There are two types of surrogacies: traditional and gestational.[56] In traditional surrogacy, professionals fertilize the surrogate’s egg by the sperm of an intended parent or a sperm donor through intrauterine insemination. In gestational surrogacy, the surrogate undergoes IVF to implant the fertilized embryo.[57] Egg donation can be used for gestational surrogacy if necessary. Those considering surrogacy need to understand the specific laws in their state, as they can differ significantly.[58] c. Intercourse TGD individuals who have not undergone genital surgery can have intercourse with the intention of causing pregnancy. TGD men who have not had genital surgery can bear children. For those who have initiated hormonal therapy, limited data has been collected on the impact of gender-affirming hormone therapy on conception.[59] TGD men have gotten pregnant after discontinuing testosterone use.[60] TGD women who have not had genital surgery can have intercourse with a person with ovaries and produce sperm to fertilize an egg. Gender-affirming hormone therapy possibly affects sperm viability.[61] V. A Decision Aid to Support Informed Consent and Shared Decision Making For individuals pursuing gender-affirming care, time is of the essence when considering fertility preservation. In one review, transgender health doctors reported that most patients did not want to postpone treatment for fertility preservation procedures, even if they wanted children;[62] any delay in treatment can be distressing for those with gender dysphoria.[63] Providers face several challenges when counseling patients about fertility. The WPATH guidelines pose an ethical dilemma for transgender health providers as limited data offers guidance about discussing fertility risks and recommendations with patients.[64] For TGD patients, limited and contradictory data about fertility outcomes before, during, and after gender affirmation exists, particularly for the lasting impact of gender-affirming hormone therapy.[65] For TGD women who have taken estrogen and stopped to pursue fertility preservation, data on sperm quality is mixed.[66] The data on when normal ovarian function resumes is variable for TGD men using testosterone who have stopped to pursue fertility preservation.[67] Much data comes from the oncofertility literature, which indicates that when providers use standardized counseling practices when discussing fertility with their patients, more patients undergo fertility preservation, and patient satisfaction increases.[68] For individuals seeking gender-affirming care, there is a need for a decision aid that providers can utilize across multiple clinics and programs.[69],[70] Patients must be aware of the benefits, risks, and alternatives of any intervention to provide truly informed consent. When discussing fertility for TGD patients, this includes which fertility options are available at each stage of transition and the potential for a live birth with each option.[71] Furthermore, a decision aid would allow for shared decision-making, where the patient is an active participant and co-designer of their treatment plan.[72] Shared decision-making acknowledges the healthcare provider’s beneficence, knowledge, and experience while equally valuing the right to patient autonomy and respecting the ability of the patient to inform the provider.[73] A decision aid can help initiate the conversations between a patient and their provider that allow for a true partnership in decision-making. A recent study investigated the efficacy and impact of a web-based fertility decision aid targeted at TGD adolescents and young adults.[74] This tool, titled Aid for Fertility-Related Medical Decisions (AFFRMED), significantly increased fertility knowledge in both youth and their parents while improving youth’s perceived ability to make fertility decisions.[75] Youth participants and their parents found the tool “feasible, acceptable, and usable.”[76] This initial study was small, with only eight adolescents or young adults and seven parents participating.[77] At large, the effectiveness of the trial will be the next step in determining the legitimacy of the aid for clinical use.[78] A similar decision-making tool designed for TGD adults would also be useful. The tool can present an average range of expected costs as much variability exists and costs change over time. This tool should also include general information on what is required to pursue each path to parenthood. For example, a patient undergoing fertility preservation needs to know what steps are necessary after the cryopreservation of gametes for live birth.[79] CONCLUSION Individuals pursuing gender-affirming care must closely consider the impact of their medical and surgical care on their desire to become parents as early in their affirmation journey as possible. A decision aid can be helpful if it outlines the risks to fertility and options to preserve fertility, with the specific data necessary to make an informed choice. The tool should include the methods of fertility preservation, each step of the protocol and respective risks for each method, the expected timeline from initiation to completion, general success rates, options for remaining gamete disposition, and the average cost of treatment. This should include a list of steps to initiate the process for each method and any potential barriers or obstacles. For surrogacy, the tool should include the two types and the average cost. For intercourse, the aid should include information on risks for discontinuing gender-affirming hormone therapy and general success rates. Clinics and providers could elect to tailor the decision aid for their population to include specific information about local laws and the availability of services. With a standardized fertility decision aid, TGD individuals can have a more thorough understanding of the opportunities and limitations placed on their reproductive capacity. Healthcare providers can feel more confident that their patients have access to relevant information regarding family-building before initiating medical or surgical affirmation. This allows for a more substantial informed consent and shared decision-making process, regardless of the decision made. A trial-tested decision-making tool for TGD adolescents and young adults exists that can serve as a model for creating aid for TGD adults of all ages. 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K., Chen, D., Dabrowski, E., Gosiengfiao, Y., Campo-Engelstein, L., Rosoklija, I., Jacobson, J., Shnorhavorian, M., Pavone, M. E., Moravek, M. B., Bonifacio, H. J., Simons, L., Hudson, J., Fechner, P. Y., Gomez-Lobo, V., Kadakia, R., Shurba, A., Rowell, E., & Woodruff, T. K.. (2016). Proceedings of the Working Group Session on Fertility Preservation for Individuals with Gender and Sex Diversity. Transgender Health, 1(1), 99–107. https://doi.org/10.1089/trgh.2016.0008 [20] Cheng, P. J., Pastuszak, A. W., Myers, J. B., Goodwin, I. A., & Hotaling, J. M.. (2019). Fertility concerns of the transgender patient. Translational Andrology and Urology, 8(3), 209–218. https://doi.org/10.21037/tau.2019.05.09 [21] Cheng (2019). [22] WPATH (2012). [23] WPATH (2012). [24] Bizic (2018). [25] Tornello, S. L., & Bos, H. (2017). Parenting Intentions Among Transgender Individuals. LGBT health, 4(2), 115–120. https://doi.org/10.1089/lgbt.2016.0153 [26] Sterling (2020). [27] Sterling (2020). [28] Sterling (2020). [29] Sterling (2020). [30] Health care for transgender and gender diverse individuals. ACOG Committee Opinion No. 823. American College of Obstetricians and Gynecologists. Obstet Gynecol 2021;137:e75–88. [31] Hembree (2017). [32] WPATH (2012). [33] Tornello (2017). [34] Tornello (2017). [35] Moravek (2019). [36] Wiesenthal (2022). [37] Choi, J. Y., & Kim, T. J.. (2022). Fertility Preservation and Reproductive Potential in Transgender and Gender Fluid Population. Biomedicines, 10(9), 2279. https://doi.org/10.3390/biomedicines10092279 [38] Wiesenthal (2022). [39] Mayhew (2020). [40] Sterling (2020). [41] American Society of Reproductive Medicine. (n.d.). Is in vitro fertilization expensive? In Vitro Fertilization (IVF). Retrieved November 28, 2022, from https://www.reproductivefacts.org/faqs/frequently-asked-questions-about-infertility/q06-is-in-vitro-fertilization-expensive/ [42] American Society of Reproductive Medicine. (n.d.). The difference between IUI and IVF - A patient education micro-video. Reproductive Facts. Retrieved November 20, 2022, from https://www.reproductivefacts.org/resources/educational-videos/videos/asrmsart-micro-videos/videos/the-difference-between-iui-and-ivf/ [43] Family Equality (2019). [44] Sterling (2020). [45] Bizic (2018). [46] Bizic (2018). [47] Choi (2022). [48] Bizic (2018). [49] Choi (2022). [50] Choi (2022). [51] Tornello (2017). [52] Brown, C.. (2021). Exploring trans people’s experiences of adoption and fostering in the United Kingdom: A qualitative study. International Journal of Transgender Health, 22(1-2), 89–100. https://doi.org/10.1080/26895269.2020.1867396 [53] Movement Advancement Project. "Equality Maps: Foster and Adoption Laws." https://www.lgbtmap.org/equality-maps/foster_and_adoption_laws. Accessed 10/28/2022. [54] Movement Advancement Project. “Equality Maps: Foster and Adoption Laws” (2022). [55] Movement Advancement Project. “Equality Maps: Foster and Adoption Laws” (2022). [56] Torres, G., Shapiro, A., & Mackey, T. K.. (2019). A review of surrogate motherhood regulation in south American countries: pointing to a need for an international legal framework. BMC Pregnancy and Childbirth, 19(1). https://doi.org/10.1186/s12884-019-2182-1 [57] Family building through gestational surrogacy. Committee Opinion No. 660. American College of Obstetricians and Gynecologists. Obstet Gynecol 2016;127:e97–103. [58] Family building through gestational surrogacy (2016). [59] Light, A. D., Obedin-Maliver, J., Sevelius, J. M., & Kerns, J. L.. (2014). Transgender Men Who Experienced Pregnancy After Female-to-Male Gender Transitioning. Obstetrics & Gynecology, 124(6), 1120–1127. https://doi.org/10.1097/aog.0000000000000540 [60] Obedin-Maliver, J., & Makadon, H. J.. (2016). Transgender men and pregnancy. Obstetric Medicine, 9(1), 4–8. https://doi.org/10.1177/1753495x15612658 [61] Choi (2022). [62] Bizic (2018). [63] Finlayson (2016). [64] Moravek (2019). [65] Mayhew, A. C., & Gomez-Lobo, V.. (2020). Fertility Options for the Transgender and Gender Nonbinary Patient. The Journal of Clinical Endocrinology & Metabolism, 105(10), 3335–3345. https://doi.org/10.1210/clinem/dgaa529 [66] Mayhew (2020). [67] Mayhew (2020). [68] Sterling (2020). [69] Kolbuck, V. D., Sajwani, A., Kyweluk, M. A., Finlayson, C., Gordon, E. J., & Chen, D.. (2020). Formative development of a fertility decision aid for transgender adolescents and young adults: a multidisciplinary Delphi consensus study. Journal of Assisted Reproduction and Genetics, 37(11), 2805–2816. https://doi.org/10.1007/s10815-020-01947-8 [70] Sterling (2020). [71] Sterling (2020). [72] De Snoo-Trimp, J., De Vries, A., Molewijk, B., & Hein, I.. (2022). How to deal with moral challenges around the decision-making competence in transgender adolescent care? Development of an ethics support tool. BMC Medical Ethics, 23(1). https://doi.org/10.1186/s12910-022-00837-1 [73] What Does the Evolution From Informed Consent to Shared Decision Making Teach Us About Authority in Health Care?. (2020). What Does the Evolution From Informed Consent to Shared Decision Making Teach Us About Authority in Health Care?. AMA Journal of Ethics, 22(5), E423–429. https://doi.org/10.1001/amajethics.2020.423 [74] Chen, Diane. (2021, June 3 - 2021, October 9). Fertility Decision-Making in Youth and Young Adults. Identifier NCT05175170. https://clinicaltrials.gov/ct2/show/NCT05175170 [75] Chen, D., Kolbuck, V. D., Sajwani, A., Shen, E., Finlayson, C., & Gordon, E. J.. (2022). 51. Feasibility, Acceptability, and Preliminary Efficacy of AFFRMED (Aid For Fertility-Related Medical Decisions), a Web-Based Fertility Decision Aid for Transgender and Non-binary Youth and their Parents. Journal of Adolescent Health, 70(4), S27–S28. https://doi.org/10.1016/j.jadohealth.2022.01.164 [76] Chen (2022). [77] Chen (2022). [78] Chen (2022). [79] Moravek (2019).

Photo by Andrew James on Unsplash INTRODUCTION Since its inception, bioethics has focused on Western conceptions of ethics and science. This has provided a strong foundation to build bioethics as a field and discipline. However, it has largely failed to consider non-Western systems of ethics and science like Indigenous American thought frameworks. This has important implications for the treatment of Indigenous Americans in healthcare settings, something that I have considered as a mixed Indigenous American researcher of sociology, global health and bioethics. While there has been recognition of other thought frameworks impacting bioethics, these have largely focused on differences among religions and their adherents. While religious frameworks are important, bioethics must also recognize, learn, and implement different cultural frameworks. Bioethics cannot simply recognize these non-Western frameworks; it must also legitimately incorporate them as frameworks. Non-Western conceptions have too often been used in a secondary status or as a historical outlier or curiosity which leads to failure in integrating non-Western frameworks to their full extent and benefit. BACKGROUND Indigenous American philosophy has strong foundations throughout North and South America[1] that can provide a base for developing Indigenous-focused bioethics. While Indigenous Americans cannot be considered a monolith, there are similarities across Indigenous cultures in their approach to reality—developing Indigenous bioethics will necessarily incorporate these shared philosophies.[2] These similarities are present in the US philosophical tradition of pragmatism. Pragmatism arises from the Indigenous pragmatism which values interacting with other beings and the environment, plurality of thought, connections to the community, and growth from the other three dimensions.[3] This shared pragmatism centers the actions of individuals as the defining feature of maintaining balance in all scenarios of socializing and work—achieving the “center good.” [4] Tlacoqualli in Monequi is a Mexica (Aztec) saying that translates to the “center good is required” and means “middle way of being” or consistently managing imbalances and obligations to achieve a long-term balance. For example, indulging in excesses requires the opposite to follow: making do with less for a period or balancing receiving with giving.[5] The actions of individuals must maintain the balance, which simultaneously encourages self-responsibility and responsibility to the community.[6] Additionally, the individual is not judged only by their actions but also by their omissions—failure to act either unintentionally or intentionally—and judged on the morality of their decision as if they had acted.[7] There have been calls for developing Indigenous bioethics,[8] including analyses of important distinctions between Western and Indigenous ethical approaches to health care such as how Indigenous patients understand core bioethical concepts like autonomy and non-maleficence.[9] These differences in thought impact all aspects of Indigenous health care and how providers approach fundamental tasks like revealing diagnoses or encouraging surgeries.[10] Indigenous ethics place great value on individual decisions made in the context of community input. Failing to appreciate this cultural difference can prevent an Indigenous patient from maintaining the center good and therefore violate a fundamental aspect of being.[11] Providers must also understand the nuances of religion and Indigenous ethics. While many Indigenous people adhere to elements of Christianity or other religious philosophies, many Indigenous people still maintain traditional cosmovisions.[12] These cosmovisions—ways that Indigenous communities understand life, earth, the universe and its moral constructs—demand adherence not to a supreme ethereal deity but to Indigenous pragmatism and, therefore, the “center good” so that an individual can live a happy and healthy life. Failing to adhere to the cosmovisions results in the decay of that person, and even their community, on physical, emotional, and spiritual levels.[13] ANALYSIS Previous work on Indigenous bioethics has referred to Indigenous philosophies in a secondary way. This placement of Indigenous ethics onto a second tier still demands that Indigenous patients adhere to dominant Western ethical discourses. Indigenous pragmatism calls for a plurality of thought and method. This means that Western ethics can apply in the treatment of Indigenous patients, but that Indigenous ethics must be on an equal plane or elevated above Western ethics in the treatment of Indigenous patients. The Indian Health Service (IHS) in the US provides an example. This system is treaty-obligated to provide health care to Indigenous Americans, the only racialized group in the US to have federal government-provided healthcare. However, many providers in the expansive IHS system operate from a Western ethic. This viewpoint leads to negative interactions and miscommunications.[14] It also adds to the persistent racism and ethnocentrism documented in the IHS by the US Commission on Civil Rights.[15] Multiple paths to achieving Indigenous health equity exist. However, a vital component is engaging a specific Indigenous ethic based on Indigenous philosophies rather than merely referencing them. Indigenous patients of the IHS can receive more culturally sensitive and competent care if they are engaged on a cultural level. A brief hypothetical to illustrate: a non-Indigenous IHS physician requests an ethics consult to convince a patient they need surgery; the provider views this as non-maleficence (a way to avoid harm to the patient) and is frustrated with the involvement of the patient’s family and close friends in the patient’s decision to delay the surgery; the doctor views the involvement of other people as a violation of the patient’s autonomy. The Indigenous patient views the physician’s continued insistence as offensive and becomes frustrated that their decision to delay is not respected. The physician and the patient view both autonomy and non-maleficence differently. The Indigenous patient views autonomy as a fundamental interaction between oneself and one’s communities, not as a purely individual choice. The patient also does not view the physician’s actions as doing no harm, as the violation of the Indigenous worldview is causing distress to the patient. In this hypothetical, the physician could alleviate the distress by understanding the patient’s ethics. The decision to delay the operation based on community feedback is an autonomous decision of the patient who does not view the delay as a harm but as a positive, since they are patiently exploring their options and ensuring that their community is equally comfortable with the decision. In this case, the insistence that the patient violate their Indigenous pragmatism causes the harm and violation of autonomy. l. Progress and Considerations Bioethics has made important strides toward cultural competency and many programs train students in medical disciplines. While there have been significant improvements in cultural competency training and recognition, programs still do not adequately consider care of Indigenous patients,[16] and they do not sufficiently consider the complexities of Indigenous decision making. US laws privilege the Western conception of autonomy and the accompanying understanding of individualism.[17] However, these laws and frameworks do not sufficiently consider complex Indigenous nuances and communal social structures. While Indigenous patients, or their proxy, will be the one to sign off on a decision, the process still centers a Western understanding of individualism, autonomy, and body[18] that constrains Indigenous patients and often demands violation of their balanced “center good.” Resolving this conflict conceptually and in practice is not easy and will continue to require patience and the necessary involvement of Indigenous communities, bioethicists, and practitioners. CONCLUSION Indigenous philosophies often oppose traditional Western ethics employed in US healthcare. The IHS provides care to Indigenous people and could employ and further develop the use of Indigenous pragmatism and ethics. An Indigenous patient that is treated based on Indigenous philosophies and ethics can receive care and consultations that incorporate their interactions and responsibilities to their families and communities and recognize that the Indigenous patient will have a plurality of thought systems and requests based in multiple cultural contexts that may seem foreign to non-Indigenous practitioners and ethicists. The center good here demands fully incorporating Indigenous philosophies and bioethics. Failing to maintain this center good and develop explicit Indigenous ethics for all Indigenous patients—inside and out of the IHS—only serves to continue the severe healthcare inequalities experienced by Indigenous communities. - [1] Léon-Portilla, Miguel. 1963. Aztec Thought and Culture: A Study of the Ancient Nahuatl Mind. Norman, OK: University of Oklahoma Press; Pratt, Scott L. 2002. Native Pragmatism: Rethinking the Roots of American Philosophy. Bloomington, IN: Indiana University Press. [2] Ellerby, Jonathan H., John McKenzie, Stanley McKay, Gilbert J. Gariépy, Joseph M. Kaufert. 2000. “Bioethics for clinicians: 18. Aboriginal cultures”. Canadian Medical Association Journal 163(7):845-850; Cordova, V.F. 2007. How It Is: The Native American Philosophy of V.F. Cordova. Tucson, AZ: University of Arizona Press. [3] Pratt 2002 [4] Dunbar-Ortiz, Roxanne. 2014. An Indigenous Peoples' History of the United States. Boston, MA: Beacon Press; Graeber, David and David Wengrow. 2021. The Dawn of Everything: A New History of Humanity. New York, NY: Farrar, Straus and Giroux. [5] Maffie, James. 2019. “Weaving the Good Life in a Living World: Reciprocity, Balance and Nepantla in Aztec Ethics” Science, Religion and Culture (https://dx.doi.org/10.17582/journal.src/2019.6.1.15.25). [6] Maffie, James. 2022. “Aztec Philosophy” Internet Encyclopedia of Philosophy. https://iep.utm.edu/aztec-philosophy/#H6 [7] Abarbanell, Linda and Marc D. Hauser. 2009. “Maya Morality: An exploration of permissible harms” Cognition 115(2010):207-224. [8] Ellerby et al. 2000; Abarbanell & Hauser 2009 [9] Kotalik, Jaro and Gerry Martin. 2016. “Aboriginal Health Care and Bioethics: A Reflection on the Teaching of the Seven Grandfathers”. The American Journal of Bioethics 16(5):38-43 (https://doi.org/10.1080/15265161.2016.1159749); Wescott, Siobhan and Beth Mittelstet. 2020. “Three Levels of Autonomy and One Long-Term Solution for Native American Health Care”. AMA Journal of Ethics 22(10):856-861 (https://doi.org/10.1001/amajethics.2020.856) [10] Ellerby et al. 2000 [11] Maffie 2022 [12] Leeming, Ben. 2013. “’Jade Water, Gunpowder Water’: Water Imagery in Nahuatl Descriptions of Heaven & Hell”. Presented at the American Society for Ethnohistory annual meeting. New Orleans, LA. (https://www.academia.edu/11810951/_Jade_Water_Gunpowder_Water_Water_Imagery_in_Nahuatl_Descriptions_of_Heaven_and_Hell). [13] Maffie 2022 [14] Gurr, Barbara. 2014. Reproductive Justice: The Politics of Health Care for Native American Women. New Brunswick, NJ: Rutgers University Press. [15] US Commission on Civil Rights. 2004. Broken Promises: Evaluating the Native American Health Care System. (https://www.usccr.gov/files/pubs/docs/nabroken.pdf). [16] Nortjé, Nico, Kristen Jones-Bonofiglio and Claudia R. Sotomayor. 2021. “Exploring values among three cultures from a global bioethics perspective”. Global Bioethics 32(1):1-14.; Winters, Alexandra. 2016. “Trespass to Culture: The Bioethics of Indigenous Populations’ Informed Consent in Mainstream Genetic Research Paradigms”. American Indian Law Review 41(1):231-251. [17] Norjé et al. 2021 [18] Winters 2016

Photo by Sean Pollock on Unsplash ABSTRACT Bioethics and Corporate Social Responsibility (CSR) were born out of similar concerns, such as the reaction to scandal and the restraint of irresponsible actions by individuals and organizations. However, these fields of knowledge are seldom explored together. This article attempts to explain the motives behind the gap between bioethics and CSR, while arguing that their shared agenda – combined with their contrasting principles and goals – suggests there is potential for fruitful dialogue that enables the actualization of bioethical agendas and provides a direction for CSR in health-related organizations. INTRODUCTION Bioethics and Corporate Social Responsibility (CSR) seem to be cut from the same cloth: the concern for human rights and the response to scandal. Both are tools for the governance of organizations, shaping how power flows and decisions are made. They have taken the shape of specialized committees, means of stakeholder inclusion at deliberative forums, compliance programs, and internal processes. It should be surprising, then, that these two fields of study and practice have developed separately, only recently re-approaching one another. There have been displays of this reconnection both in academic and corporate spaces, with bioethics surfacing as part of the discourse of CSR and compliance initiatives. However, this is still a relatively timid effort. Even though the bioethics-CSR divide presents mostly reasonable explanations for this difficult relationship between the disciplines, current proposals suggest there is much to be gained from a stronger relationship between them. This article explores the common history of bioethics and corporate social responsibility and identifies their common features and differences. It then explores the dispute of jurisdictions due to professional and academic “pedigree” and incompatibilities in the ideological and teleological spheres as possible causes for the divide. The discussion turns to paths for improving the reflexivity of both disciplines and, therefore, their openness to mutual contributions. I. Cut Out of the Same Cloth The earliest record of the word “bioethics” dates back to 1927 as a term that designates one’s ethical responsibility toward not only human beings but other lifeforms as well, such as animals and plants.[1] Based on Kantian ethics, the term was coined as a response to the great prestige science held at its time. It remained largely forgotten until the 1970s, when it resurfaced in the United States[2] as the body of knowledge that can be employed to ensure the responsible pursuit and application of science. The resurgence was prompted by a response to widespread irresponsible attitudes toward science and grounded in a pluralistic perspective of morality.[3] In the second half of the twentieth century, states and the international community assumed the duty to protect human rights, and bioethics became a venue for discussing rights.[4] There is both a semantic gap and a contextual gap between these two iterations, with some of them already being established. Corporate social responsibility is often attributed to the Berle-Dodd debate. The discussion was characterized by diverging views on the extent of the responsibility of managers.[5] It was later settled as positioning the company, especially the large firm, as an entity whose existence is fomented by the law due to its service to the community. The concept has evolved with time, departing from a largely philanthropic meaning to being ingrained in nearly every aspect of a company’s operations. This includes investments, entrepreneurship models, and its relationship to stakeholders, leading to an increasing operationalization and globalization of the concept.[6] At first sight, these two movements seem to stem from different contexts. Despite the difference, it is also possible to tell a joint history of bioethics and CSR, with their point of contact being a generalized concern with technological and social changes that surfaced in the sixties. The publishing of Silent Spring in 1962 by Rachel Carson exemplifies this growing concern over the sustainability of the ruling economic growth model of its time by commenting on the effects of large-scale agriculture and the use of pesticides in the population of bees, one of the most relevant pollinators of crops consumed by humans. The book influenced both the author responsible for the coining bioethics in the 1971[7] and early CSR literature.[8] By initiating a debate over the sustainability of economic models, the environmentalist discourse became a precursor to vigorous social movements for civil rights. Bioethics was part of the trend as it would be carried forward by movements such as feminism and the patients’ rights movement.[9] Bioethics would gradually move from a public discourse centered around the responsible use of science and technology to academic and government spaces.[10] This evolution led to an increasing emphasis on intellectual rigor and governance. The transformation would unravel the effort to take effective action against scandal and turn bioethical discourse into governance practices,[11] such as bioethics and research ethics committees. The publication of the Belmont Report[12] in the aftermath of the Tuskegee Syphilis Experiment, as well as the creation of committees such as the “God Committee,”[13] which aimed to develop and enforce criteria for allocating scarce dialysis machines, exemplify this shift. On the side of CSR, this period represents, at first, a stronger pact between businesses and society due to more stringent environmental and consumer regulations. But afterward, a joint trend emerged: on one side, the deregulation within the context of neoliberalism, and on the other, the operationalization of corporate social responsibility as a response to societal concerns.[14] The 1990s saw both opportunities and crises that derived from globalization. In the political arena, the end of the Cold War led to an impasse in the discourse concerning human rights,[15] which previously had been split between the defense of civil and political rights on one side and social rights on the other. But at the same time, agendas that were previously restricted territorially became institutionalized on a global scale.[16] Events such as the European Environment Agency (1990), ECO92 in Rio de Janeiro (1992), and the UN Global Compact (2000) are some examples of the globalization of CSR. This process of institutionalization would also mirror a crisis in CSR, given that its voluntarist core would be deemed lackluster due to the lack of corporate accountability. The business and human rights movement sought to produce new binding instruments – usually state-based – that could ensure that businesses would comply with their duties to respect human rights.[17] This rule-creation process has been called legalization: a shift from business standards to norms of varying degrees of obligation, precision, and delegation.[18] Bioethics has also experienced its own renewed identity in the developed world, perhaps because of its reconnection to public and global health. Global health has been the object of study for centuries under other labels (e.g., the use of tropical medicine to assist colonial expeditions) but it resurfaced in the political agenda recently after the pandemics of AIDS and respiratory diseases.[19] Bioethics has been accused from the inside of ignoring matters beyond the patient-provider relationship,[20] including those related to public health and/or governance. Meanwhile, scholars claimed the need to expand the discourse to global health.[21] In some countries, bioethics developed a tight relationship with public health, such as Brazil,[22] due to its connections to the sanitary reform movement. The United Kingdom has also followed a different path, prioritizing governance practices and the use of pre-established institutions in a more community-oriented approach.[23] The Universal Declaration on Bioethics and Rights followed this shift toward a social dimension of bioethics despite being subject to criticism due to its human rights-based approach in a field characterized by ethical pluralism.[24] This scenario suggests bioethics and CSR have developed out of similar concerns: the protection of human rights and concerns over responsible development – be it economic, scientific, or technological. However, the interaction between these two fields (as well as business and human rights) is fairly recent both in academic and business settings. There might be a divide between these fields and their practitioners. II. A Tale of Jurisdictions It can be argued that CSR and business and human rights did not face jurisdictional disputes. These fields owe much of their longevity to their roots in institutional economics, whose debates, such as the Berle-Dodd debate, were based on interdisciplinary dialogue and the abandonment of sectorial divisions and public-private dichotomies.[25] There was opposition to this approach to the role of companies in society that could have implications for CSR’s interdisciplinarity, such as the understanding that corporate activities should be restricted to profit maximization.[26] Yet, those were often oppositions to CSR or business and human rights themselves. The birth of bioethics in the USA can be traced back to jurisdictional disputes over the realm of medicine and life sciences.[27] The dispute unfolded between representatives of science and those of “society’s conscience,” whether through bioethics as a form of applied ethics or other areas of knowledge such as theology.[28] Amid the civil rights movements, outsiders would gain access to the social sphere of medicine, simultaneously bringing it to the public debate and emphasizing the decision-making process as the center of the medical practice.[29] This led to the emergence of the bioethicist as a professional whose background in philosophy, theology, or social sciences deemed the bioethicist qualified to speak on behalf of the social consciousness. In other locations this interaction would play out differently: whether as an investigation of philosophically implied issues, a communal effort with professional institutions to enhance decision-making capability, or a concern with access to healthcare.[30] In these situations, the emergence and regulation of bioethics would be way less rooted in disputes over jurisdictions. This contentious birth of bioethics would have several implications, most related to where the bioethicist belongs. After the civil rights movements subsided, bioethics moved from the public sphere into an ivory tower: intellectual, secular, and isolated. The scope of the bioethicist would be increasingly limited to the spaces of academia and hospitals, where it would be narrowed to the clinical environment.[31] This would become the comfort zone of professionals, much to the detriment of social concerns. This scenario was convenient to social groups that sought to affirm their protagonism in the public arena, with conservative and progressive movements alike questioning the legitimacy of bioethics in the political discourse.[32] Even within the walls of hospitals and clinics, bioethics would not be excused from criticism. Afterall, the work of bioethicists is often unregulated and lacks the same kind of accountability that doctors and lawyers have. Then, is there a role to be played by the bioethicist? This trend of isolation leads to a plausible explanation for why bioethics did not develop an extensive collaboration with corporate social responsibility nor with business and human rights. Despite stemming from similar agendas, bioethics’ orientation towards the private sphere resulted in a limited perspective on the broader implications of its decisions. This existential crisis of the discipline led to a re-evaluation of its nature and purpose. Its relevance has been reaffirmed due to the epistemic advantage of philosophy when engaging normative issues. Proper training enables the bioethicist to avoid falling into traps of subjectivism or moralism, which are unable to address the complexity of decision-making. It also prevents the naïve seduction of “scientifying” ethics.[33] This is the starting point of a multitude of roles that can be attributed to the bioethicists. There are three main responsibilities that fall under bioethics: (i) activism in biopolicy, through the engagement in the creation of laws, jurisprudence, and public policies; (ii) the exercise of bioethics expertise, be it through the specialized knowledge in philosophical thought, its ability to juggle multiple languages related to various disciplines related to bioethics, or its capacity to combat and avoid misinformation and epistemic distortion; (iii) and, intellectual exchange, by exercising awareness that it is necessary to work with specialists from different backgrounds to achieve its goals.[34] All of those suggest the need for bioethics to improve its dialogue with CSR and business and human rights. Both CSR and business and human rights have been the arena of political disputes over the role of regulations and corporations themselves, and the absence of strong stances by bioethicists risks deepening their exclusion from the public arena. Furthermore, CSR and business and human rights are at the forefront of contemporary issues, such as the limits to sustainable development and appropriate governance structures, which may lead to the acceptance of values and accomplishment of goals cherished by bioethics. However, a gap in identifying the role and nature of bioethics and CSR may also be an obstacle for bridging the chasm between bioethics and CSR. III. From Substance to Form: Philosophical Groundings of CSR and Bioethics As mentioned earlier, CSR is, to some extent, a byproduct of institutionalism. Institutional economics has a philosophical footprint in the pragmatic tradition[35], which has implications for the purpose of the movement and the typical course of the debate. The effectiveness of regulatory measures is often at the center of CSR and business and human rights debates: whatever the regulatory proposal may be, compliance, feasibility, and effectiveness are the kernel of the discussion. The axiological foundation is often the protection of human rights. But discussions over the prioritization of some human rights over others or the specific characteristics of the community to be protected are often neglected.[36] It is worth reinforcing that adopting human rights as an ethical standard presents problems to bioethics, given its grounding in the recognition of ethical pluralism. Pragmatism adopts an anti-essentialist view, arguing that concepts derive from their practical consequences instead of aprioristic elements.[37] Therefore, truth is transitory and context dependent. Pragmatism embraces a form of moral relativism and may find itself in an impasse in the context of political economy and policymaking due to its tendency to be stuck between the preservation of the status quo and the defense of a technocratic perspective, which sees technical and scientific progress as the solution to many of society’s issues.[38] These characteristics mean that bioethics has a complicated relationship with pragmatism. Indeed, there are connections between pragmatism and the bioethics discourse. Both can be traced back to American naturalism.[39] The early effort in bioethics to make it ecumenical, thus building on a common but transitory morality,[40] sounds pragmatic. Therefore, scholars suggest that bioethics should rely on pragmatism's perks and characteristics to develop solutions to new ethical challenges that emerge from scientific and technological progress. Nonetheless, ethical relativism is a problem for bioethics when it bleeds from a metaethical level into the subject matters themselves. After all, the whole point of bioethics is either descriptive, where it seeks to understand social values and conditions that pertain to its scope, or normative, where it investigates what should be done in matters related to medicine, life sciences, and social and technological change. It is a “knowledge of how to use knowledge.” Therefore, bioethics is a product of disillusionment regarding science and technology's capacity to produce exclusively good consequences. It was built around an opposition to ethical relativism—even though the field is aware of the particularity of its answers. This is true not only for the scholarly arena, where the objective is to produce ethically sound answers but also for bioethics governance, where relativism may induce decision paralysis or open the way to points of view disconnected from facts.[41] But there might be a point for more pragmatic bioethics. Bioethics has become an increasingly public enterprise which seeks political persuasion and impact in the regulatory sphere. When bioethics is seen as an enterprise, achieving social transformation is its main goal. In this sense, pragmatism can provide critical tools to identify idiosyncrasies in regulation that prove change is needed. An example of how this may play out is the abortion rights movement in the global south.[42] Despite barriers to accessing safe abortion, this movement came up with creative solutions and a public discourse focused on the consequences of its criminalization rather than its moral aspects. IV. Bridging the Divide: Connections Between Bioethics and CSR There have been attempts to bring bioethics and CSR closer to each other. Corporate responsibility can be a supplementary strategy for achieving the goals of bioethics. The International Bioethics Committee (IBC), an institution of the United Nations Educational, Scientific and Cultural Organization (UNESCO), highlights the concept that social responsibility regarding health falls under the provisions of the Universal Declaration on Bioethics and Human Rights (UDBHR). It is a means of achieving good health (complete physical, mental, and social well-being) through social development.[43] Thus, it plays out as a condition for actualizing the goals dear to bioethics and general ethical standards,[44] such as autonomy and awareness of the social consequences of an organization’s governance. On this same note, CSR is a complementary resource for healthcare organizations that already have embedded bioethics into their operations[45] as a way of looking at the social impact of their practices. And bioethics is also an asset of CSR. Bioethics can inform the necessary conditions for healthcare institutions achieving a positive social impact. When taken at face value, bioethics may offer guidelines for ethical and socially responsible behavior in the industry, instructing how these should play out in a particular context such as in research, and access to health.[46] When considering the relevance of rewarding mechanisms,[47] bioethics can guide the establishment of certification measures to restore lost trust in the pharmaceutical sector.[48] Furthermore, recognizing that the choice is a more complex matter than the maximization of utility can offer a nuanced perspective on how organizations dealing with existentially relevant choices understand their stakeholders.[49] However, all of those proposals might come with the challenge of proving that something can be gained from its addition to self-regulatory practices[50] within the scope of a dominant rights-based approach to CSR and global and corporate law. It is evident that there is room for further collaboration between bioethics and CSR. Embedding either into the corporate governance practices of an organization tends to be connected to promoting the other.[51] While there are some incompatibilities, organizations should try to overcome them and take advantage of the synergies and similarities. CONCLUSION Despite their common interests and shared history, bioethics and corporate social responsibility have not produced a mature exchange. Jurisdictional issues and foundational incompatibilities have prevented a joint effort to establish a model of social responsibility that addresses issues particular to the healthcare sector. Both bioethics and CSR should acknowledge that they hold two different pieces of a cognitive competence necessary for that task: CSR offers experience on how to turn corporate ethical obligations operational, while bioethics provides access to the prevailing practical and philosophical problem-solving tools in healthcare that were born out of social movements. 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