Academic literature on the topic 'Fetus Diseases Treatment Moral and ethical aspects'

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Journal articles on the topic "Fetus Diseases Treatment Moral and ethical aspects"

1

Ko, Hsun-Kuei, Chi-Chun Chin, Min-Tao Hsu, and Shu-Li Lee. "Phenomenon of moral distress through the aspect of interpretive interactionism." Nursing Ethics 26, no. 5 (April 15, 2018): 1484–93. http://dx.doi.org/10.1177/0969733018766579.

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Background: Most previous studies on moral distress focused on the factors that cause moral distress, paying inadequate attention to the moral conflict of nurses’ values, the physician–nurse power hierarchy, and the influence of the culture. Research objective: To analyze the main causes for moral distress with interpretive interactionism. Research design: A qualitative study was adopted. Participants: Through purposeful sampling, 32 nurses from 12 different departments were chosen as the samples. Ethical considerations: Approval from the Institutional Review Board of the Kaohsiung Medical University Hospital. Findings: Moral distress is likely to occur in the following clinical situations: patients have no idea about their diseases; the medical decisions fail to meet the optimum benefit of patients; and patients with terminal cancers are not given a proper death. The reason why nurses become trapped in moral distress is that they fail to achieve moral goodness. Inadequate confidence, the physician–nurse power hierarchy, and the Oriental culture affect nurses’ goodness-based intention for patients, which deteriorates moral distress. Discussion: The main cause for moral distress is the moral goodness of nurses. If nurses’ goodness-based intention for patients is inconsistent with the moral objective of achieving optimum benefit for patients, it leads to moral distress. Culture is an essential background factor of care for patients. In the Oriental culture, family members influence patients’ right to know about their diseases, the choice of treatment, and patients’ autonomy of not receiving cardio-pulmonary resuscitation. This results in moral distress in medical care. Conclusion: The occurrence of moral distress demonstrates that nurses have moral characteristics such as goodness and caring. It is suggested that appropriate educational strategies can be adopted to weaken the power hierarchy between physicians and nurses and enhance nurses’ confidence and cultural sensitivity, so as to reduce the moral distress of nurses.
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Ilieva, Antonia G. "Ethical and Legal Aspects of Medical Screening for Early Diagnosis of Diseases. Prevention and Prophylaxis." Folia Medica 61, no. 3 (September 30, 2019): 451–57. http://dx.doi.org/10.3897/folmed.61.e39410.

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Introduction: The main priorities of the implemented health policies in the Republic of Bulgaria are directly aimed at preserving and improving the health of the population, providing equal access of patients to modern and efficient healthcare, promptness and quality, in compliance with the normative requirements of the offered health service. In this sense, the focus of these health policies is to prioritize prevention and prophylaxis of early diagnosis of diseases. It is much more reasonable to prevent the disease or to manage it at an early stage than to slow down the treatment until the pathological processes develop into severe or irreversible complications. Aim: The aim of this systematic review is to investigate the effectiveness of existing legal acts governing the implementation of a common health policy in the field of health promotion and prevention. Another aim is to localize regulatory gaps and make relevant optimization suggestions. Materials and methods: The analysis of this systematic review is based on a thorough review of the existing regulatory framework (statutory and regulative legislation, case law, European practice) that concerns public health. Articles focused directly on the issues of medical screening and public health in a national and global perspective have been studied.Results: Two major legal acts, two regulations and strategies of the World Health Organization are considered. Suggestions for optimization of the control activity of the administrative bodies in the sector are presented. Conclusions: From the analysis done, proposals for optimization of the existing legal framework in the sector of health-care were made. The proposals were made based on the results of the analysis of w8orld trends regarding the methodology for state funding of medical screening for early diagnosis of diseases. The issue in question is up to date and raises issues related to legislative regulation, moral, ethical and deontological principles to which the medical profession adheres, as well as the health policy that is followed by the Ministry of Health in this aspect.
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Kudela, Milan, Radovan Pilka, Petr Dzvinčuk, Radim Marek, and Olga Klementová. "Bloodless surgery and gynecological patients among Jehovah’s Witnesses." Česká gynekologie 86, no. 2 (May 15, 2021): 110–13. http://dx.doi.org/10.48095/cccg2021110.

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Overview Objective: The aim of this research is to present our experiences with the surgical treatment of gynecological patients among Jehovah’s Witnesses. Moreover, the medical, moral, and ethical problems in this regard have been highlighted. Methods: 75 Jehovah’s Witnesses patients were operated on for various benign and malignant gynecological diseases between 2007 and 2018. All of these patients were operated on according to the rules of blood-sparing surgery. Results: The operations were assessed according to the dia­gnosis, mode of surgery, estimated blood loss, and disease outcome. Excessive blood loss did not occur during any of these operations, and the estimated blood loss for the same procedure was 10 to 550 mL. Conclusion: Jehovah’s Witnesses gynecological patients is a group of high-risk patients because they refuse to undergo blood transfusion. Nevertheless, the principles of blood-sparing surgery should be applied to not only Jehovah’s Witnesses patients but also to all patients in general. Even if a blood transfusion is the last resort to solve issues pertaining to excessive blood loss during complicated operations, the said procedure always carries certain risks. Therefore, blood transfusion should be performed only on rare occasions. Jehovah’s Witnesses patients categorically refuse blood transfusion even if it is the only way to save one’s life. Even though the legislation of the Czech Republic deals with this problem, there are other moral and ethical aspects that need to be addressed in this regard. Keywords: bloodless surgery – Gynecologic surgery – Jehovah’s Witnesses – legislation – moral and ethical problems
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Vladimir M., Sokolov, and Stovba Andrey V. "The Imperative of the Bioethical Approach to the Moral and Political Problems of the Coronacrisis COVID-19." Humanitarian Vector 16, no. 2 (April 2021): 80–87. http://dx.doi.org/10.21209/1996-7853-2021-16-2-80-87.

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Mass diseases in the modern world, such as epidemics and even more pandemics pose global threats and risks to human civilization. Few infectious diseases known or emerging pose vital ethical problems as quickly and sharply as they did during the outbreak of the new form of the coronavirus COVID-19. The peculiarity of this epidemic is that the emergency situation in healthcare over a short period of time escalated into an economic and geopolitical crisis, which received one of its names “Corona Crisis 2020”. The World Health Organization has classified COVID-19 as a worldwide pandemic. At the time of writing this article, the epidemic has declined, but in the future, there is a threat of a “new wave” of infectious diseases. The moral and political dilemmas arising from the outbreak of the new coronavirus, among other problems, also actualize many bioethical considerations in developing methods and tactics for combating the epidemic. The limited capabilities of the healthcare system and medicine in the treatment of infections highlight the need for understanding bioethical approaches to many problems and challenges affecting the vital values and interests of the individual, medical workers and society as a whole. We attempt to identify and briefly analyze some aspects of the political and moral state of modern society, due to corona crisis COVID-19. A comparative analysis of existing concepts of bioethics with an emphasis on the need for adapting ethical standards and requirements for public health policies is given. We stress the importance of adhering to the principle of mutual moral responsibility of the state and the individual; the protection of socio-economic and political rights and freedoms of a person during the period of implementation long-term measures of isolation and long-term emergency situation. Keywords: coronavirus COVID-19, pandemics, bioethics, policy, health organization
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Russa, Afadhali Denis. "Stem Cells: Prospects and Potential Applications in Tanzania: A review." Tanzania Journal of Health Research 21, no. 2 (September 4, 2020): 1–8. http://dx.doi.org/10.4314/thrb.v21i2.8.

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Stem cell technology and its application in regenerative medicine is the future gateway for the treatment of most non-communicable diseases (NCDs). As the burden of NCDs continues to rises globally, regenerating the cells, tissues and organs will be the mainstream treatment option. The world is prepared for this intriguing but promising avenue of biomedical technology and medicine but Africa is grossly lagging far behind. African governments, universities, research and health institutions need to take a leading role in empowering and mainstreaming stem cell research. Moreover, for Africa, there is a huge potential for translating stem cell technology into clinical treatments due to the fact that there are limited treatment options for life-threatening forms of NCDs. Some African countries have well-developed stem cell facilities and large-scale stem cell therapy centers. The use of adult stem cells in liver failure, diabetes and cardiac infarcts has shown success in some African countries. The present work reviews the status, potential and future prospects of stem cell technology and regenerative medicine in Tanzania with particular emphasis on the adult stem cells applicability into the immediate use inpatient care. The paper also reviews the available cell identification systems and markers and moral and ethical aspects of stem cell science necessary in the translational treatment regimens.
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Schmitz, Dagmar, and Wolfram Henn. "The fetus in the age of the genome." Human Genetics, August 23, 2021. http://dx.doi.org/10.1007/s00439-021-02348-2.

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AbstractDue to a number of recent achievements, the field of prenatal medicine is now on the verge of a profound transformation into prenatal genomic medicine. This transformation is expected to not only substantially expand the spectrum of prenatal diagnostic and screening possibilities, but finally also to advance fetal care and the prenatal management of certain fetal diseases and malformations. It will come along with new and profound challenges for the normative framework and clinical care pathways in prenatal (and reproductive) medicine. To adequately address the potential ethically challenging aspects without discarding the obvious benefits, several agents are required to engage in different debates. The permissibility of the sequencing of the whole fetal exome or genome will have to be examined from a philosophical and legal point of view, in particular with regard to conflicts with potential rights of future children. A second requirement is a societal debate on the question of priority setting and justice in relation to prenatal genomic testing. Third, a professional-ethical debate and positioning on the goal of prenatal genomic testing and a consequential re-structuring of clinical care pathways seems to be important. In all these efforts, it might be helpful to envisage the unborn rather not as a fetus, not as a separate moral subject and a second “patient”, but in its unique physical connection with the pregnant woman, and to accept the moral quandaries implicitly given in this situation.
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Koval, Anna. "LEGAL AND ETHICAL ASPECTS OF BIOMEDICAL TECHNOLOGIES DEVELOPMENT AND THEIR IMPACT ON A HUMAN BODY." International scientific journal "Internauka". Series: "Juridical Sciences", no. 11(33) (2017). http://dx.doi.org/10.25313/2520-2308-2020-11-6561.

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he end of the twentieth century and the beginning of the twentyfirst century has begun the rapid development of scientific researches in the biological and medical fields. This process is associated with using of fundamentally new methods, which are primarily aimed at the disease prevention, as well as the introduction into the treatment of human diseases with the latest scientific and innovative technologies, methods and techniques of their application. These opportunities in the development of scientific technologies in the field of biology and medicine have led to the emergence of such a direction of scientific activity as "biotechnology". The proposed article notes that using of biomedical technologies has caused a number of new problems in the field of law and ethics. Legal arrangement in the field of the health protection have become much more complicated. Thanks to new opportunities, today these relations regulate rights and responsibilities of a fairly large number of people. Modern relations in the field of medical services and medical care lead to the emergence of new approaches to their regulation by both legal and ethical norms. In the past, relations in the field of the health protection were usually between two subjects, a doctor and a healthcare consumer. Nowadays, in a medical practice, relations in the field of the health protection involve: a health-care consumer, his family members (e.g., in the case of hereditary diseases diagnosis, blood and organ donation etc.) and third parties (e.g., organ donation, reproductive cell donation, surrogacy etc.). In the general doctrinal concept, biotechnology is the industrial use of living organisms or their parts (microorganisms, fungi, algae, plant and animal cells, cellular organs, enzymes etc.) for product producing or modifying, improving plants and animals, and in medical practice - in relation of the individual human organs (or body as a whole) functioning. These circumstances require improving the legal regulation of modern medicine public relations, bringing them into line with emerging realities. Moreover, the specifics of relations in this field determines the specifics of their legal regulation. The application of new medical technologiesin relation to human treatment has given rise to a significant number of moral and ethical problems that could not be solved within the framework of medical ethics and deontology alone. In connection with this, the way out of the current situation could be the consolidation of bioethics as an interdisciplinary field of knowledge, as a science, which makes it possible to explain moral, ethical and legal aspects of the medicine. This, for example, determines the allocation of medical law in an independent branch of law in some Western countries and Ukraine. The article focuses on biomedical ethics, which is a component of the medical activities system regulation. In the context of considering the levels of social regulation of medical activities, bioethics (biomedical ethics) is an interdisciplinary science that studies moral and ethical, social and legal problems of medical activities in the context of human rights protection. Bioethics should create a set of moral principles, norms and rules that are binding on all mankind and delineate the limits of scientific interference in the nature of the human body, the transition through which is unacceptable.
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Khasueva, Eliza Umarovna, Yana Evgenevna Efimova, Diana Khasanbievna Khatanova, Leila Ibragimovna Bachieva, Alina Yurievna Maslova, Kamila Nurmagomedovna Magomedova, Aiza Gazimagomedovna Galbatsova, Miyasat Sirazhutdinovna Kurbanova, Taibat Yunadievna Mirzaeva, and Ahmed Romanovich Zadaev. "Particular Patterns of the Influence of the Physiology of Normal Pregnancy on the Pharmacokinetics of Drugs in the Liver." Journal of Pharmaceutical Research International, December 13, 2021, 256–61. http://dx.doi.org/10.9734/jpri/2021/v33i55a33830.

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Pregnant women are the most "untouchable" group of people in relation to pharmacological research due to ethical and legal aspects, as well as concerns for the health and integrity of the fetus. And that is why pregnant women practically do not participate in clinical, pharmacodynamic, or pharmacokinetic testing. The mechanisms of teratogenesis are unpredictable, and in this case mutations can occur regardless of the duration of pregnancy and at any level. In women during pregnancy, the activity of liver enzyme systems involved in drug metabolism changes completely, which affects their clearance. This should be taken into account when selecting drugs and dosages for the treatment of various diseases. Our study showed that during pregnancy, a significant decrease in the intrinsic hepatic clearance of the CYP1A2 substrate is enhanced by a decrease in the binding of theophylline to plasma proteins and an increase in the glomerular filtration rate.
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Glick, Shimon. "The Pitfalls of the Ethical Continuum and its Application to Medical Aid in Dying." Voices in Bioethics 7 (December 16, 2021). http://dx.doi.org/10.52214/vib.v7i.8945.

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Photo by Hannah Busing on Unsplash INTRODUCTION Religion has long provided guidance that has led to standards reflected in some aspects of medical practices and traditions. The recent bioethical literature addresses numerous new problems posed by advancing medical technology and demonstrates an erosion of standards rooted in religion and long widely accepted as almost axiomatic. In the deep soul-searching that pervades the publications on bioethics, several disturbing and dangerous trends neglect some basic lessons of philosophy, logic, and history. The bioethics discourse on medical aid in dying emphasizes similarity over previously recognized important distinguishing features. For example, it overplays a likeness between assistance in dying and the withdrawal of life-saving technology. In many bioethics’ topics, arguments based on a logical continuum are used to question the lines demarcating important moral differences. l. The Line Between Ethical and Not: Logic Based on Continuum Careful case selection, often either end of a continuum, allows the tearing down or ridiculing of many rules and codes across most professions and fields of interest. This situation holds true for traffic laws as well as medical ethics guidelines. It is relatively simple for those who desire to attack a particular viewpoint by selecting a case that makes that position seem untenable. In the ethics realm, good and bad medicine exist at opposite ends of an ethical continuum, with many practices lying in between. For example, much of medical ethics exists between the Nazi criminal physicians and the most sainted nurse or physician. A gradual progression occurred over less than two decades from a utilitarian position that supported limited euthanasia for those with certain mental illnesses to genocide. German society embraced a utilitarian ethic in which the value of human life no longer was intrinsic but instrumental.[1] Many morally significant points on a continuum were then ignored as the misguided utilitarian policy rampantly continued. A point in the continuum to distinguish between ethically justifiable and that which is not can be difficult to identify compared to the two extremes. This continuum is not unique to ethics but can be applied to almost any other aspect of human life and endeavor. Between a severely ill schizophrenic person and a superbly well-adjusted individual, there is a continuum of mental and psychological function. The existence of a continuum should not paralyze thinking and prevent us from drawing lines and identifying moral differences based on objective criteria as well as moral philosophy. Yet, by focusing on a continuum, many bioethicists use logic to disregard dividing lines between an "ethical" and an "unethical" act. Unfortunately, sometimes bioethicists draw revolutionary conclusions that would change the scope of medical practices which is accepted as ethical. There are many examples of similar shifts on the continuum. Many authors argue for the ethical permissibility of abortion by pointing out that the human fetus is no different in various characteristics, one arguing it is as like an ape or chick as it is like a person,[2] and does not achieve unique human and individual characteristics until well into the first year of life.[3] While human fetuses arguably do not have certain distinctive qualities of personhood, most people shy away from the logical next conclusion: permitting infanticide. For example, Joshua Lederberg condemns infanticide, in the face of biological illogic, because of our emotional commitment to infants, to me, a relatively weak explanation. Sir Francis Crick suggests we might consider birth at two days of life in order to decide whether an infant is a "suitable" member of society.[4] Giublini and Minerva suggest that infanticide should be permissible since late pregnancy abortions are permissible, arguing there is no significant difference between a fetus just before birth and an infant just after birth.[5] Clearly the continuum approach would allow for subjective arguments in favor of later infanticide at other points many days post-birth. Years ago, with a cynical tone, I mentioned infanticide as a further step on the continuum beyond abortion, and I was rightly shouted down as being deliberately provocative to assert the logic would ever stretch so far. While it is not an accepted mainstream position, the movement in academic settings from widespread condemnation to limited possible acceptance of infanticide has taken place in an incredibly short time. Public opinion and medical opinion in these areas have shifted dramatically in a short time. In another area, from a biological and chemical point of view, there is a continuum from man down to a single carbon atom. Yet, it would not seem logical to ignore the emotional differences, the meaning of personhood, or the moral distinction between killing an insect and killing a person. ll. A False Continuum: Medical Aid in Dying I assert that there has been an erosion of ethical guidelines in recent years attributable to using continuums to camouflage important distinctions. James Rachels’ work on active and passive euthanasia, which contends that the two are ethically identical, exemplifies that logic.[6] He illustrates this thesis, using a continuum to compare different scenarios with like consequences as morally equivalent, by comparing the deliberate drowning of a child with a deliberate failure to rescue a drowning child when easily able to do so. The author's comparison proposes that since much of the medical profession has already made peace with withholding treatment in order to hasten death, consistency inexorably demands that we permit active euthanasia as well.[7] When permission for active euthanasia was first introduced, it was limited exclusively to patients suffering severely from an intractable, incurable, and irreversible disease. These guidelines have been continuously eroded. There is now a substantial serious consideration for permitting active euthanasia of healthy elderly individuals who feel that they have completed their lives and are "tired of living."[8] There are many moral and factual differences along the ethical continuum. In human life, there is a difference between a live baby and a fetus, between a viable fetus and one that is not, between a fetus and a zygote, and between a zygote and a sperm cell. Similarly, there is a difference between pulling a trigger to kill someone and not interfering in preventing his death, which is reprehensible though both may be. There is a difference between not resuscitating an 80-year-old man with cancer when his heart stops and injecting him with a fatal dose of potassium chloride. I argue that an overt act of taking life repels civilized human beings is to be commended and encouraged as the reverence for human life or even for just a moment of human life is one of the great contributions of our civilization. CONCLUSION As an orthodox Jew, I feel that divinely inspired guidelines that have stood the test of centuries shape my beliefs, and such guidelines contradict medical aid in dying. I cannot speak to the viewpoint of those who do not access religion in defining their moral stance, nor do I implicate them in the current bioethics' trends, as I am not aware of the personal role of religion in the lives of most such authors. While many nonreligious people have a firm philosophical grounding and oppose medical aid in dying, I suggest that in the absence of any religious or other absolute standards, developing logically defensible ethical guidelines may be challenging. At the least, religion may play a role in defining the points on the continuums that are ethically meaningful and refuting the trending beliefs that if the endpoint is the same, allowing different methods of arriving at that end are somehow ethically equal. The continuum of ways death may result does not negate analysis of whether death is brought about in ways that recognize the importance of life. The German philosopher Hans Jonas said, "It is a question whether without restoring the category of the sacred, the category most thoroughly destroyed by the scientific enlightenment, we can have an ethics able to cope with the extreme powers that we possess today and constantly increase and are compelled to use."[9] While countries vary on the role of religion in policy, with many emphasizing freedoms of religion, a recent position paper released by a group of Jewish, Christian, and Moslem leaders (the three Abrahamic religions) suggested the need for agreement on the unique sanctity of human life.[10] I would recommend that such a document serve as an example of consensus on critical foundational bioethical guidelines for democratic secular societies. - [1] Alexander L (1949) Medical science under dictatorship. New England Journal of Medicine, 241, p39-47 DOI10.1056/NEJM194907142410201 [2] Lederberg J. (1967) A geneticist looks at contraception and abortion, Annals of Internal Medicine 67, sup 2, 25-27. https:/doi.org/10.7326/0003-4819-67-3-25 [3] Ibid. [4] Editorial, Sociology: Logic of biology. Nature 220, 429 (1968) https://www.nature.com/articles/220429b0 [5] Giublini A Minerva F (2013) After-birth abortion: why should the baby live. J Med Ethics 39, 261- [6] Rachels J (1975) Active and passive euthanasia. New England Journal of Medicine 292, 78-80 [7] Ibid. [8] Cohen-Almagor R Euthanizing people who are "tired of life". in Euthanasia and Assisted Suicide-Lessons from Belgium. Ch 11 of Euthanasia and Assisted Suicide, Cambridge University Press pp173-187. 2017 and DOI; https://doi.org/10.1017/9781108182799.012 [9] Hans Jonas, Technology and Responsibility: Reflections on the New Tasks of Ethics, 1972, found as Chapter IX, Philosophical Essays, 1980. https://inters.org/jonas-technology-responsability [10] A position paper of the Abrahamic Monotheistic religions on matters concerning the end-of-life. Vatican Press 28 October 2019 https://press.vatican.va/content/salastampa/en/bollettino/pubblico/2019/10/28/191028f.html
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Croydon, Silvia. "In It Together." Voices in Bioethics 8 (March 17, 2022). http://dx.doi.org/10.52214/vib.v8i.9426.

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Photo by Sangharsh Lohakare on Unsplash ABSTRACT The public should debate the ethical and social challenges arising from heritable human genome editing (HHGE). The notorious case involving He Jiankui may have led to the disfavor of gene editing and a precautionary approach. While the de facto global moratorium on HHGE is clearly justified considering our current inability to implement it safely and effectively, the difficult ethical considerations should be addressed prior to the ability to initiate widespread HHGE. This piece argues that prospective patients and other members of society beyond the scientific community must be included in the conversation. It emphasizes the potential role of those not directly participating in HHGE science, calling the broader academic community not simply to wait for scientists’ results and only afterward react. Pointing to key historical examples, I contend that scientific progress is intrinsically linked with the surrounding societal discussion and that it is not only scientists who can influence where the HHGE story ends. INTRODUCTION l. Rogue Scientists Chinese biophysicist He Jiankui announced the world’s first genetically modified babies in 2018. Naturally, the treatment aroused the attention of the world’s media, which focused on He’s reckless actions. Indeed, in setting up and carrying out the procedure in question, he flouted norms of good scientific practice on a range of levels—errors paid with time in prison. Since the He controversy, few scientists have aggressively approached heritable human genome editing (HHGE) and challenged the current research norms. The most outspoken exception is the Russian molecular biologist Denis Rebrikov of the Pirogov Russian National Research Medical University. He publicly declared his intention to apply clustered regularly interspaced short palindromic repeats (CRISPR) to embryos to help couples avoid passing serious medical conditions to their children. However, Rebrikov met fierce opposition both inside and beyond Russia and, with leading CRISPR scientists and bioethicists abroad describing him as a “cowboy” who had “weak data” and was trying to “grab some attention.”[1] So far, Rebrikov’s plans have failed to come to fruition. Although there are 126 entries listed in a registry of HHGE research recently created by the World Health Organization (WHO),[2],[3] it seems that clinical HHGE has been paused for the time being. ll. Steering the Conversation A section of the scientific community has been trying to steer the ethical debate on HHGE away from the actions of rogue scientists and back to an issue that is central to the matter—the interests of patients. The majority would agree that the most compelling potential application of germline genome editing is for the prevention of devastating genetic conditions, for example, when both parents carry Huntington’s disease, for which “genome editing offers the only prospect of bearing a healthy, genetically related child.”[4] Despite such justification for scientists to continue pursuing research in the area, there has been a notable reticence in the wider academic community regarding making the ethical case for HHGE and clarifying in which medical situations such a technique might be reasonably applied. Even among those who recognize that the HHGE cases' controversies should not be a reason for panic over designer babies, some believe that starting the ethical debate is premature. A key part of the argument is that the current technological and scientific knowledge available is far from ready to deliver on treatments. A similar stance preventing debate in the wider society is that “difficult questions” about cost, accessibility, and social justice remain.[5] Whether intended or not, the implication is that the position of wider society in the HHGE story should be a reactive one, namely waiting to see what the scientists throw at them and then dealing with it. I argue that there is not only an immediate need for broader academic and societal input on the ethical and social aspects of the HHGE debate but that there is a deep symbiosis between scientific progress and its surroundings, whereby science both shapes and is shaped by the societal environment in which it takes place. The WHO published a position paper, recommendations, and a framework for governance. The framework for governance describes global standards for the governance and oversight of HHGE.[6] The position paper emphasized the importance of global and inclusive dialogue,[7] and many other boards have also called for broad public engagement.[8] It is imperative that WHO’s governance framework meets everyone’s needs. After all, as with any medical treatment, it is not the scientist who developed the treatment or the doctor who delivers it that is most important– that honor falls to the patient. In the case of HHGE, the beneficiaries include those members of society who hope to reproduce. Yet HHGE has the potential to impact society. We all should have an opportunity to be a part of world-changing decisions that lead to the creation are made and feel a responsibility to participate. lll. Shutting Down the Academic Debate At the 30th Annual Conference of the Japanese Association for Bioethics, which took place in late 2018 after He’s experiment, the discussion about HHGE was shut down quickly. Notwithstanding the understandable issues raised with He’s case, one participant after another stood up to voice support for an outright and complete ban on the use of CRISPR.[9] The ban was based on the grounds that editing the human genome would result in a cascade of unforeseen and irreversible consequences for future generations. One participant forcefully argued that “the deoxyribose nucleic acid (DNA) rubicon should never be crossed for above all, it was deeply immoral to do so when there was no way of obtaining the consent of those who would actually stand affected—our descendants.”[10] Another saw it as putting humanity on a slippery slope toward enhancements, and some feared the catastrophic mistakes that might result from their use.[11] While the above event provides just one snapshot of the debate that was taking place around the world at the time, it captures the strong reservations in the scientific community. It is a common view, not only in Japan, that the human genome is something sacred, a relic handed down from generations, that we ought to treasure and preserve. In support of such a view, religious and other more pragmatic reasons are offered. For example, some may fear the disasters that might befall us if we choose to intervene in the process through which we pass our genetic code from one generation to another. Such arguments are certainly still at the heart of the ethical debate, but the foundations upon which they are built are by no means universally accepted. Stanford University bioethicist Henry Greely writes, “the human germline genome” does not exist; instead, each of us has a unique genome.[12] Greely argues that HHGE is no different from the changes our genomes have undergone through numerous medical interventions. For example, synthetic insulin has increased the number of people with DNA variations that lead to diabetes. Those with this condition would have died as a child in the past. However, now they live long enough to be able to reproduce. Similarly, the transition from hunting to farming centuries ago resulted in a greater number of copies in our gene pool of starch-digesting genes. Yet Greely suggested that, practically, HHGE is “not very useful in the near- to midterm” (by which he means “the next several decades”)[13] “mainly because other technologies can attain almost all the important hoped-for benefits of [HHGE], often with lower risk,” citing embryo selection and somatic gene editing as two alternative options. Greely argued that applying HHGE for enhancement beyond disease prevention and is currently not a realistic option because we lack the necessary knowledge. In Greely’s opinion, “how worried should we be [about HHGE]…? A bit, but not very and not about much.”[14] Greely’s assertions that other scientific debates should take precedence and that the concerns are not ripe for debate yet are concerning. lV. Why Shutting Down the Debate Might Not be a Good Idea First, the timeframe described by Greely seems somewhat out of line with that described by leading scientists. As far back as 2018, at the same Summit where He made his revelations, George Q. Daley stressed that HHGE is scientifically feasible here and that the ethical considerations can no longer be put off: “…a number of groups have applied gene editing now to human embryos in the context of in vitro fertilization and attempting to determine variations of a protocol that would enhance the fidelity and reduce mosaicism. I think there has been an emerging consensus that the off-target problem is manageable, and in some cases even infinitesimal. There are some interesting proofs of principles, like diseases such as beta-thalassemia that could potentially be approached with this strategy.”[15] It would also be possible to challenge Greely on various other aspects. One of which would be the number of cases to which HHGE would be relevant and the kinds of moral allowances that might be made, and each case concludes that more urgency is required in the ethical debate. Greely suggests that most people can use preimplantation genetic testing (PGD), which is the embryo selection process, and that perhaps HHGE could apply to couples where both have the same autosomal recessive gene.[16] Greely rules out considering HHGE in cases where PGD is applicable. Greely concedes PGD does not already represent the answer on this topic, as it often fails to provide couples with enough healthy embryos to transfer. As a resolution to this issue, he points to the creation of eggs using induced pluripotent stem cell (iPSC) techniques, whereby eggs can potentially be created from other cells.[17] However, given the extremely limited success of iPSCs in the clinical arena to date, in vitro gametogenesis is a highly speculative solution. Certainly, the progress of iPSC research is not such a safe bet that placing all our hopes on it at the expense of HHGE techniques is currently justified. (Also, it should be noted that making eggs using the iPSC technique is hardly an ethical problem-free area itself.) In summary, the cases of couples looking to conceive that Greely rules out by pointing to PGD should be kept on the HHGE table, as various other scholars have suggested.[18] Many of us debating HHGE are not scientists, so the best we can do is draw from the information we glean from those more technically capable. As a society, we are not just passive observers of science; we should have influence over decisions that impact society. Indeed, even if the available science is not yet at a place where we should be worried about large-scale ethical and social concerns, the story will continue to unfold in the future. While Greely is happy to see the human race “muddle through” the ethical challenges of scientific breakthroughs, such a position fails to recognize that society at large is far from powerless. V. Society Influencing Scientific Progress There are some notable examples of society’s impact on scientific progress. For example, political policies led to the development of nuclear technology for war and strategic deterrence, despite societal objections seen through demonstrations of people protesting using the slogan “no nukes.” Furthermore, the Bush administration drastically limited the use of embryonic stem cells in the 2000s due to a strong religious and cultural influence on policy.[19] Societal debate potentially serves as a powerful factor in guiding science. Where societal acceptance is ambiguous, science tends to operate on its own. But where science would impact life’s fundamental issues like war, how embryos should be valued, or the end of life, society should weigh in and influence the role of science. Societal views on the current global moratorium on HHGE could lead to a ban, as has been advocated.[20] On the other hand, societal views that value HHGE as a way to expand reproductive autonomy may justify permitting its use. Opening an ethics debate about it would enable scientists to pursue technologies that society deems justifiable as well as set limits for where they should stop. Making this process more difficult, the He affair has clearly colored public discourse on HHGE in a way that inhibits debate. In Japan, a sequence of questionnaires in 2016, 2018, and 2019 showed that the widely publicized HHGE scandal led to a significant decline in the acceptance of genome editing technology in general, particularly for human reproduction. Specifically, the surveys revealed a stark rise in disapproval of the technology’s use on fertilized human eggs—from 12 percent in 2018 to 29 percent in 2019.[21] The three scientists that conducted these surveys suggested that “the news of the twin babies in China had a substantial influence on the Japanese public,” damaging the reputation of HHGE.[22] It seems likely that the public distaste for HHGE was prompted by He’s research rather than considerations about the scientific potential of HHGE The change in public opinion may also make politicians and scientists more hesitant when it comes to taking the lead in the HHGE debate. Ultimately, this can restrict the public discussion of the central ethical challenges of the technology and hinder efforts to determine whether there is a responsible path forward other than an outright ban. Stressing the importance of the issue again to potential patients and failing to engage further with the HHGE debate is surely not something society should allow. While there are many important ongoing debates about genetics, like biohacking and DIY hobbyists, HHGE deserves attention as well. In fact, attention to the ethics of HHGE should help — more awareness of how these tools can be applied and what germline genome editing is will make people more alert to the existing danger and better understand how to mitigate it. Perhaps more importantly, a clear message from society to researchers about what objectives are reasonable to pursue regarding the HHGE technologies will facilitate good science. Having a publicly determined criterion would allow scientists to not live in fear that they might be blacklisted for seeking progress in grey areas and instead confidently chase progress where it is allowed. Vl. What Now? HHGE is here (or will be soon) and brings many ethical and social challenges. However, the challenges should not be left to individual scientists and couples in desperate situations to manage alone. Moving toward how these challenges can be met practically, it is helpful to draw a parallel with the issue of implementing human rights. In the early 21st century, political philosopher Michael Freeman of the University of Essex lamented that implementing human rights had been left to lawyers. Although legal experts were clearly essential in putting together the global human rights framework, Freeman’s concern was that they were not best placed to understand implementing human rights in various contexts. Setting out a broader, interdisciplinary approach, he called for social scientists to tackle these difficult questions, ultimately moving human rights forward around the world. Similarly, in medical technology like HHGE, scientists are crucial to the story, but at the same time, they are not trained to deal with all the accompanying challenges. Bioethicists are also important, clarifying the arguments that society needs to resolve. There is a need for even wider input from across the scholarly community. For instance, as with human rights, international and domestic regulation is required, and clearly, the legal community has a role here. Moreover, as described by Freeman, since all law is political in its creation and has impacts across society, political scientists and sociologists can provide impactful input. CONCLUSION We are in it together, and we have roles to play in the discussion of HHGE. Societal discourse does not always trail the scientific reality, but rather, it can condition the path that science will follow. Given the importance of what is at stake, not only for the potential patients, but for humanity, we should not leave the HHGE debate only to scientists, and we should not leave it until later. - [1] Cohen J. “Embattled Russian scientist sharpens plans to create gene-edited babies,” Science, 21 Oct. 2019. doi:10.1126/science.aaz9337. [2] World Health Organization. “WHO issues new recommendations on human genome editing for the advancement of public health,” News release, 12 July 2021, www.who.int/news/item/12-07-2021-who-issues-new-recommendations-on-human-genome-editing-for-the-advancement-of-public-health. [3] World Health Organization. “Human Genome Editing Registry,” https://www.who.int/groups/expert-advisory-committee-on-developing-global-standards-for-governance-and-oversight-of-human-genome-editing/registry. [4] Daley GQ, Lovell-Badge R, and Steffann J. “After the Storm–A Responsible Path for Genome Editing,” New England Journal of Medicine 380, no. 10 (2019): 897-9. doi:10.1056/NEJMp1900504. [5] Daley GQ, Lovell-Badge R, and Steffann J. “After the Storm–A Responsible Path for Genome Editing,” New England Journal of Medicine 380, no. 10 (2019): 897-9. doi:10.1056/NEJMp1900504 [6] World Health Organization. “WHO issues new recommendations on human genome editing for the advancement of public health,” News Release, July 12, 2021, www.who.int/news/item/12-07-2021-who-issues-new-recommendations-on-human-genome-editing-for-the-advancement-of-public-health. [7] WHO 2021. Human Genome Editing: Position Paper, WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. [8] Daley GQ, Lovell-Badge R, and Steffann J. “After the Storm–A Responsible Path for Genome Editing,” New England Journal of Medicine 380, no. 10 (2019): 897-9. doi:10.1056/NEJMp1900504. [9] 30th Annual Conference of the Japanese Association for Bioethics, 8-9 Dec. 2018, Kyoto Prefectural University, Kyoto. [10] 30th Annual Conference of the Japanese Association for Bioethics, 8-9 Dec. 2018, Kyoto Prefectural University, Kyoto. [11] 30th Annual Conference of the Japanese Association for Bioethics, 8-9 Dec. 2018, Kyoto Prefectural University, Kyoto. [12] Greely HT. “Why the Panic Over ‘Designer Babies’ Is the Wrong Worry,” LeapsMag, 30 Oct. 2017, leapsmag.com/much-ado-about-nothing-much-crispr-for-human-embryo-editing; Greely HT. “CRISPR’d babies: human germline genome editing in the ‘He Jiankui Affair’,” Journal of Law and the Biosciences 2019; 6(1): 111–83. doi: 10.1093/jlb/lsz010; Greely HT. CRISPR People: The Science and Ethics of Editing Humans (Massachusetts: Massachusetts Institute of Technology Press, 2021). [13] Greely HT. “Why the Panic Over ‘Designer Babies’ Is the Wrong Worry,” LeapsMag, 30 Oct. 2017, leapsmag.com/much-ado-about-nothing-much-crispr-for-human-embryo-editing. [14] Greely HT. “Why the Panic Over ‘Designer Babies’ Is the Wrong Worry,” LeapsMag, 30 Oct. 2017, leapsmag.com/much-ado-about-nothing-much-crispr-for-human-embryo-editing. [15] Daley, G. (n.d.). Genome-editing-pathways to Translation. Transcript of the Human-Genome Editing Summit 2018 Hong Kong. Retrieved March 17, 2022, from https://diyhpl.us/wiki/transcripts/human-genome-editing-summit/2018-hong-kong/george-daley-genome-editing-pathways-to-translation/ [16] Greely HT. “CRISPR’d babies: human germline genome editing in the ‘He Jiankui affair’,” Journal of Law and the Biosciences 2019: 6(1): 111–83. doi:10.1093/jlb/lsz010. [17] Greely HT. CRISPR People: The Science and Ethics of Editing Humans (Massachusetts: Massachusetts Institute of Technology Press, 2021). [18] Rasnich R. “Germline genome editing versus preimplantation genetic diagnosis: Is there a case in favour of germline interventions?.” Bioethics 2020; 34(1): 60–9. [19] Murugan, Varnee. “Embryonic stem cell research: a decade of debate from Bush to Obama.” The Yale journal of biology and medicine vol. 82,3 (2009): 101-3. [20] Lander E, Baylis F, Zhang F, et al. “Adopt a moratorium on heritable genome editing,” Nature 2019; 567(7747): 165–8. pmid:30867611. [21] Watanabe D, Sato Y, Tsuda M, and Ohsawa R. Increased awareness and decreased acceptance of genome-editing technology: The impact of the Chinese twin babies. PLoS ONE 2000; 15(1): 1-13. doi:10.1371/journal.pone.0238128. [22] Watanabe D, Sato Y, Tsuda M, and Ohsawa R. Increased awareness and decreased acceptance of genome-editing technology: The impact of the Chinese twin babies. PLoS ONE 2000; 15(1): 1-13. doi:10.1371/journal.pone.0238128.
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Dissertations / Theses on the topic "Fetus Diseases Treatment Moral and ethical aspects"

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Hurlimann, Thierry. "The duty to treat very defective neonates as "persons" : from the legal and moral personhood of very defective neonates to their best interests in medical treatment." Thesis, McGill University, 2003. http://digitool.Library.McGill.CA:80/R/?func=dbin-jump-full&object_id=80929.

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The dramatic improvement of neonatal intensive care has produced vexing ethical and legal questions. One of the most striking issues is to determine whether the most defective neonates should be provided with intensive care and to what extent they should be treated. This thesis demonstrates that an attempt to answer this question and an analysis of the demands and limitations of a duty to treat defective neonates cannot properly occur without first considering the legal concerns and ethical issues surrounding the notion of "person". The author examines germane ethical theories and North-American jurisprudence to see what approaches and standards commentators and courts have adopted in this respect. This thesis demonstrates that in the context of the cessation or non-initiation of intensive care, the legal and moral status of very defective neonates remain ambiguous. In particular, the author suggests that a legal best interests analysis that includes quality of life considerations may actually involve the use of criteria similar to those supported by the authors of the controversial moral theories that negate the personhood of seriously handicapped newborns. The author ultimately concludes that a clear divide between the legal definition of the "person" and the moral and social perceptions of that term is misleading.
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Books on the topic "Fetus Diseases Treatment Moral and ethical aspects"

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New, York State Health Department Birth Defects Symposium (15th 1984 Albany N. Y. ). Perinatal genetics: Diagnosis and treatment. Orlando: Academic Press, 1986.

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Galton Institute (London, England). Symposium. Issues in fetal medicine: Proceedings of the twenty-ninth annual Symposium of the Galton Institute, London 1992. New York: St. Martin's Press in association with the Galton Institute, 1995.

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K, Beller Fritz, and Weir Robert F. 1943-, eds. The Beginning of human life. Dordrecht: Kluwer Academic Publishers, 1994.

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Technologies, Canada Royal Commission on New Reproductive. Research studies. [Ottawa: The Commission], 1993.

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Canada. Royal Commission on New Reproductive Technologies., ed. Overview of legal issues in new reproductive technologies. [Ottawa]: Royal Commission on New Reproductive Technologies, 1993.

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Before their time: Fetuses and infants at risk. Washington, DC: American Association on Mental Retardation, 1990.

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1936-, Schneider Edward D., ed. Questions about the beginning of life: Christian appraisals of seven bioethical issues. Minneapolis: Augsburg Pub. House, 1985.

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H, Nicolaides K., and Whitting Vanessa, eds. Is my baby all right?: A guide for expectant parents. Oxford: Oxford University Press, 1994.

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Fighting infectious diseases. London: Franklin Watts, 2007.

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Carl, Nimrod, Griener Glenn, and University of Calgary, eds. Biomedical ethics and fetal therapy. Waterloo, Ont., Canada: Published by Wilfrid Laurier University Press for the Calgary Institute for the Humanities, 1988.

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Book chapters on the topic "Fetus Diseases Treatment Moral and ethical aspects"

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Şen, Zekâi. "Philosophy in Medicine “Verbal Expressions in Medicine can Develop through Innovative Ideas Generation by the Philosophy”." In Scientific Philosophy and Principles in Medicine, 160–76. BENTHAM SCIENCE PUBLISHERS, 2022. http://dx.doi.org/10.2174/9789815050806122010008.

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This chapter aims to provide a physician with the foundation and principles of philosophy in medicine for freer and independent thinking. In previous chapters, a sub-branch of the philosophy of medicine related to epistemological concepts and metaphysical implications was highlighted, including ethical and even moral principles. The philosophy of medicine is a blend of medical education and training with philosophical aspects to achieve improvements and innovative findings for public health services. The philosophy of medicine includes the contra-active interactions of diseases, health and the search for effective reciprocity. By asking questions about how medical and health professionals know what to do, and detailed information is given in terms of practical medical wisdom. How should they make the right and wise decisions in morally complex and uncertain situations? And what is the patient’s role in this decision-making process? In medical practice and research, it is recommended to start problem-solving with philosophical thinking and then logical evaluations in order to reveal a better diagnosis, treatment and healing qualities for patient care.
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