Journal articles on the topic 'Paternity testing Moral and ethical aspects'

The scientific importance of our recently acquired ability to test for heredity predisposition to breast and ovarian cancers is paralleled only by its social and ethical relevance. Dilemmas are common in all genetic testing, but they assume particular nuances in the setting of breast cancer. Due to its devastating nature and to its increasing incidence, breast cancer is a central issue in women’s health. Breast cancer patients and women in general are often deeply involved in understanding the disease process and the treatment options, as they are in discussing the psychological, social and moral ramifications. This paper is a reflection upon some qualitative aspects of the debate that surrounds genetic testing for breast and ovarian cancer, as they have emerged in my encounters with breast cancer patients prior to their decision to consider genetic testing. The five recurrent themes identified in those conversations may or may not be representative of other practice situations, but they illustrate some fundamental philosophical, ethical and moral questions which exist at the core of our human essence and of our moral agency, and which point to the unavoidable intertwinement of medicine, culture, normativity and philosophy, vis-à-vis the many questions raised by genetics. The Author has intentionally refrained from questionnaires, which could betray the complexity of our thinking process, and from the vignettes, as they could betray confidentiality. The paper concludes that the correct answers to the dilemmas posed by genetic testing for breast cancer predisposition can only arise from a blend of medical, social and philosophical analysis.

The empirical literature exploring lawyers and their moral decision making is limited despite the “crisis” of unethical and unprofessional behavior in the bar that has been well documented for over a decade. In particular we are unaware of any empirical studies that investigate the moral landscape of the health lawyer’s practice. In an effort to address this gap in the literature, an interdisciplinary team of researchers at Vanderbilt University designed an empirical study to gather preliminary evidence regarding the moral reasoning of health care attorneys. The primary research question was how health lawyers respond when they encounter ethical or moral dilemmas in their practice for which the law fails to offer a bright-line solution. In exploring this question, we sought to understand better what motivations or influences guide action when health lawyers confront ethical quandaries, and whether there are specific differences, e.g., gender, experience, or religiosity, that are associated with specific responses to situations testing ethical or moral boundaries.

Persons exhibiting mutations in two tumor suppressor genes, BRCA1 and BRCA2, have a greatly increased risk of developing breast and/or ovarian cancer. The incidence of BRCA gene mutation is very high in Ashkenazi Jewish women of European descent, and many issues can arise, particularly for observant Orthodox women, because of their genetic status. Their obligations under the Jewish code of ethics, referred to as Jewish law, with respect to the acceptability of various risk-reducing strategies, may be poorly understood. In this article the moral direction that Jewish law gives to women regarding testing, confidentiality, and other issues is explored. The intent is to broaden nurses' knowledge of how a particular religious tradition could impact on decision making around genetics testing, with the aim of enhancing their understanding of culturally sensitive ethical care.

Background: Moral case deliberation is a form of clinical ethics support to help healthcare professionals in dealing with ethically difficult situations. There is a lack of evidence about what outcomes healthcare professionals experience in daily practice after moral case deliberations. The Euro-MCD Instrument was developed to measure outcomes, based on the literature, a Delphi panel, and content validity testing. To examine relevance of items and adequateness of domains, a field study is needed. Aim: To describe experienced outcomes after participating in a series of moral case deliberations, both during sessions and in daily practice, and to explore correlations between items to further validate the Euro-MCD Instrument. Methods: In Sweden, the Netherlands, and Norway, healthcare institutions that planned a series of moral case deliberations were invited. Closed responses were quantitatively analyzed. The factor structure of the instrument was tested using exploratory factor analyses. Ethical considerations: The study was approved in Sweden by a review board. In Norway and the Netherlands, data services and review boards were informed about the study. Results: The Euro-MCD Instrument was completed by 443 and 247 healthcare professionals after four and eight moral case deliberations, respectively. They experienced especially outcomes related to a better collaboration with co-workers and outcomes about individual moral reflexivity and attitude, both during sessions and in daily practice. Outcomes were experienced to a higher extent during sessions than in daily practice. The factor structure revealed four domains of outcomes, which did not confirm the six Euro-MCD domains. Conclusion: Field-testing the Euro-MCD Instrument showed the most frequently experienced outcomes and which outcomes correlated with each other. When revising the instrument, domains should be reconsidered, combined with theory about underlying concepts. In the future, a feasible and valid instrument will be presented to get insight into how moral case deliberation supports and improves healthcare.

Background: Moral courage is required at all levels of nursing. However, there is a need for development of instruments to measure nurses’ moral courage. Objectives: The objective of this study is to develop a scale to measure nurses’ self-assessed moral courage, to evaluate the scale’s psychometric properties, and to briefly describe the current level of nurses’ self-assessed moral courage and associated socio-demographic factors. Research design: In this methodological study, non-experimental, cross-sectional exploratory design was applied. The data were collected using Nurses’ Moral Courage Scale and analysed statistically. Participants and research context: The data were collected from a convenience sample of 482 nurses from four different clinical fields in a major university hospital in Finland for the final testing of the scale. The pilot comprised a convenience sample of 129 nurses. Ethical considerations: The study followed good scientific inquiry guidelines. Ethical approval was obtained from the university ethics committee and permission to conduct the study from the participating hospital. Findings: Psychometric evaluation showed that the 4-sub-scale, 21-item Nurses’ Moral Courage Scale demonstrates good reliability and validity at its current state of development showing a good level of internal consistency for a new scale, the internal consistency values ranging from 0.73 to 0.82 for sub-scales and 0.93 for the total scale, thus well exceeding the recommended Cronbach’s alpha value of >0.7. Principal component analysis and confirmatory factor analysis supported the theoretical construct of Nurses’ Moral Courage Scale. Face validity and expert panel assessments markedly contributed to the relevance of items in establishing content validity. Discussion and conclusion: Nurses’ Moral Courage Scale provides a new generic instrument intended for measuring nurses’ self-assessed moral courage. Recognizing the importance of moral courage as a part of nurses’ moral competence and its assessment offers possibilities to develop interventions and educational programs for enhancement of moral courage. Research should focus on further validation measures of Nurses’ Moral Courage Scale in international contexts.

This article focuses on the elderly patient with a progressive and irreversible dementia, most often of the Alzheimer type. However dementia, the decline in mental function from a previous state, can occur in all ages. For example, if Alzheimer's disease (AD) is the dementia of the elderly, increasingly AIDS is the dementia of many who are relatively young. I will not present the major ethical issues relating to dementia care following the progression of disease from the mild to the severe stages, for I have done this elsewhere. Among the issues included are: presymptomatic testing, both psychological and genetic; responsible diag- nostic disclosure and use of support groups; restrictions on driving and other activities; preemptive assisted suicide; advance directives for research and treatment; quality of life in relation to the use of life-extending technologies; and euthanasia.

AbstractThe world awaits a SARS-CoV-2 virus (i.e., COVID-19 disease) vaccine to keep the populace healthy, fully reopen their economies, and return their social and healthcare systems to “normal.” Vaccine safety and efficacy requires meticulous testing and oversight; this paper describes how despite grandiose public statements, the current vaccine development, testing, and production methods may prove to be ethically dubious, medically dangerous, and socially volatile. The basic moral concern is the potential danger to the health of human test subjects and, eventually, many vaccine recipients. This is further complicated by economic and political pressures to reduce government oversight on rushed vaccine testing and production, nationalistic distribution goals, and failure to plan for the widespread immunization needed to produce global herd immunity. As this paper asserts, the public must be better informed to assess promises about the novel vaccines being produced and to tolerate delays and uncertainty.

The topicality of the article is due to the strategy of transition to personalized medicine in Russia, based, among other things, on technologies of preimplantation and prenatal genetic diagnostics. The purpose of the article is to analyze the main directions of ethical and legal support for the development of these technologies. The work is based on the study of relevant international regulations, foreign and Russian legislation using the methods of legal-dogmatic and philosophical-legal analysis. The article substantiates the need for a clearer distinction between legal and moral-religious approaches to regulating relations in applying these technologies. The task is to find legal structures that can take into account the moral aspects of the problem without replacing legal regulation with an appeal to moral and religious values and norms. An example of this approach is the development of a legal regime for manipulations with embryo in vitro, in which the necessary legal protection of the embryo is provided by recognizing its special ontological status as a constitutional value of the common good. From these positions, the author identifies a range of issues that should form the organizational and legal context necessary to ensure adequate guarantees of human rights in the field of application of the considered genetic technologies. The legal regulation of this range of issues should be fixed in a special federal law on genetic testing.

The aim of this review study is to analyze and describe the main moral and ethical aspects regarding the minor patients' healthcare related procedures. The Pediatric Ethics differentiate from that of the competent adults, such particularities including surrogate decisions, confidentiality issues, genetic testing and research related matters, end-of-life situations and legal framework. An important aspect is that the child is not entirely lacking capacity, in fact, the literature underlines the importance of listening, analyzing and taking into consideration the minor patient’s opinions, statements or judgements according to their age and cognitive development. The approach of the minor patient should always take into account the triad “doctor-parent-child” without neglecting any of the participants and their role. The main responsibility of the healthcare professionals is to act guided by the best interests of the minor patient.

For decades questionnaires have been used to measure the cognitive and psychological effects of prenatal genetic testing, but little is known about why some women undergo testing and others decline. Research indicates that many factors influence decision making, including values and beliefs. What is often denied rather than recognized is that the professional and personal values and beliefs held by the health care provider influence the patient’s decision. It is assumed that, if genetic services are delivered in a nondirective manner, patients will not be affected by the provider’s personal and professional standpoint. The qualitative research data reported here challenge this assumption. Getting to know patients’ moral understanding and patterns of ethical reasoning by listening to their personal stories is recommended as a better way for nurses to help patients to make informed and autonomous decisions about prenatal genetic screening or diagnostic tests.

AbstractThere is growing consensus that teaching computer ethics is important, but there is little consensus on how to do so. One unmet challenge is increasing the capacity of computing students to make decisions about the ethical challenges embedded in their technical work. This paper reports on the design, testing, and evaluation of an educational simulation to meet this challenge. The privacy by design simulation enables more relevant and effective computer ethics education by letting students experience and make decisions about common ethical challenges encountered in real-world work environments. This paper describes the process of incorporating empirical observations of ethical questions in computing into an online simulation and an in-person board game. We employed the Values at Play framework to transform empirical observations of design into a playable educational experience. First, we conducted qualitative research to discover when and how values levers—practices that encourage values discussions during technology development—occur during the design of new mobile applications. We then translated these findings into gameplay elements, including the goals, roles, and elements of surprise incorporated into a simulation. We ran the online simulation in five undergraduate computer and information science classes. Based on this experience, we created a more accessible board game, which we tested in two undergraduate classes and two professional workshops. We evaluated the effectiveness of both the online simulation and the board game using two methods: a pre/post-test of moral sensitivity based on the Defining Issues Test, and a questionnaire evaluating student experience. We found that converting real-world ethical challenges into a playable simulation increased student’s reported interest in ethical issues in technology, and that students identified the role-playing activity as relevant to their technical coursework. This demonstrates that roleplaying can emphasize ethical decision-making as a relevant component of technical work.

This article is the final report of a study of legal ethics and professionalism involving in depth interviews about problem solving conducted with nearly two hundred lawyers practicing in various settings: in different sizes of firms, in different sizes of communities, in private practice and in in-house or corporate counsel positions. Previously published findings of this research project having established that lawyers rarely turn to their ethical codes to solve problems, preferring instead to rely upon informal information gleaned from within their own offices (although lawyers from smaller firms remain more often comfortable with information drawn from beyond the firm than those from larger firms), this article focuses on analysis of the interviews of those lawyers who identified themselves as concerned with issues involving their roles as lawyers. The analysis maps the lawyers' own descriptions of their situations onto the “hired gun” and “counselor” models of lawyer-client interaction taken from the literature. The findings confirm our preliminary findings that these two roles are not mutually exclusive. Although all the lawyers concerned with their roles began in a mentoring mode, most lawyers eventually relinquished their decision-making to their clients, a transition fraught with challenges for many of them. A minority, however, despite the dictates of their code of ethics, withdrew from cases or even, exceptionally, substituted their own decision-making for that of their clients. The article links the mentoring model to the care perspective in the literature of moral development and the hired gun model to the rights perspective. The findings did not establish any support for the claim that the presence of women is creating a "softer" voice in the legal profession. However, two aspects of the structure of the profession, private practice versus in-house practice and the size of the centre in which the practice is located, engendered variations in professional attitudes.

PurposeA significant and increasing number of graduate recruits take up employment for specific companies by virtue of their ethical reputation and profiles. As such, ethical fit has become an important dimension of the attraction and retention of graduates. However, preconceived notions of a company’s ethical orientation obtained through the media and initial recruitment exercises may be challenged during the induction and socialization phases of organizational entry, such that people may find that the reputation is just an external façade leading to disappointment and a reassessment of the employer. The paper aims to discuss these issues.Design/methodology/approachThe study’s essential focus is on building a conceptual ethical fit model and to underline the need for further conceptual development in the area. The analysis of extant secondary data and the methodology of serendipity were used.FindingsThe model’s conceptual cogency and practical utility for human resource management are analyzed in the light of specific secondary data and specific propositions described.Research limitations/implicationsA major concern with conceptual models is empirical validity and practical utility which requires empirical testing. However, this limitation has been mitigated by the use of a serendipitous approach from a qualitative empirical study with a generalized person–organization (P–O) focus.Practical implicationsVarious practical implications of the model described in the paper for HR management are evident from empirical studies in the area which have dealt with particular aspects of the model. For example, Baueret al.(1998) found that socialization effects employee turnover. And, Cable and Parsons (2001) indicate that organizational socialization is critical in generating committed employees whose values are congruent with those of the organization. Since committed employees are critical for the success of the organization, they suggest training programs for hiring managers and criteria in performance appraisals that include the development of employee value congruence through specific formal socialization tactics.Originality/valueThe paper contributes to the extant literature by building a dynamic conceptual model with attendant testable propositions that explore the implications of employee misalignment in pre-socialization anticipatory organizational ethical fit and post-socialization organizational ethical fit. More specifically, the study contributes to the extant literature by considering the socialization process in relation to ethical fit dynamics. It also considers from the point of view of specific moral development theory and changing perceptions of ethical climate that occur during organizational socialization. Serendipitous material obtained from a qualitative study of P–O fit puts flesh on the bones of the effects of the socialization process on ethical fit described by the paper’s conceptual model while providing circumstantial evidence for the propositions and their practical utility for HR management.

Összefoglaló. A humán kutatások eredményeit bemutató közlemények számos adattal szolgálnak a megismerni kívánt jelenségre vonatkozóan. Általánosan elfogadott elvárás a vonatkozó etikai szabályok szigorú betartása, az előírt vizsgálati protokollok betartása. Az emberekkel végzett vizsgálatoknak azonban van egy olyan dimenziója, amelyre az etikai szabályok nem térnek ki, s amelyek a vizsgálati eredményeket, illetve azok reprezentativitását is befolyásolják. Ezek mindegyike a pszichológia vizsgálódási területéhez tartozik, legyen szó a pszichológiai kutatások etikai kérdéseiről, vagy az orvosbiológiai kutatások, orvosi beavatkozások, illetve azok elfogadásának pszichológiai aspektusairól. A tanulmány a pszichológia megváltozott etikai felfogásának rövid bemutatását követően a genetikai kutatások pszichológiai aspektusait és az egészség-magatartás kritikus kérdéseit elemzi. Az utóbbiak esetében a kockázatészlelés, valamint a bizalom, megbízhatóság pszichológiai modelljeiből kiindulva mutatja be az oltási hajlandóság és az oltásellenesség ismert pszichológiai faktorait. Summary. Publications presenting the results of human research provide a wealth of data on the phenomenon to be explored. It is a generally accepted expectation to adhere strictly to the relevant ethical rules and to the required protocols. However, studies in humans have a dimension that is not fully covered by ethical rules and that also affects the studies’ results and their representativeness. All of these belong to the field of research in psychology, be it the ethical issues of psychological research or the psychological aspects of biomedical research, medical interventions, and their acceptance. Researchers of these and other scientific areas widely believe that science is morally neutral, that is, its task is the discovery of facts, the further development of the investigations’ tools and methods to perform correct analysis and draw reliable conclusions. However, research and development are characterized by a kind of moral neutrality, the essence of which is that the researcher not participating in the decisions on applications is neutral in general. This means that the curiosity driven research should not pay attention to risks associated with the use of results. However, many recent concerns related to the long-term effects of broadly applied inventions speaks for the need on consensus how the consequences could or should be forecasted. Following a brief presentation of the changed ethical perception of psychology, I give some examples on the psychological aspects of genetic research and that of the critical issues in health behavior. Concerns psychological in nature have been articulated in the last decade and it became increasingly clear that genetic testing can also have psychological factors that must be considered. Moreover, the recent focus on psychological aspects of human research shed light on the complexity of health behavior, and questions have been raised about the known psychological factors of the human reactions to suggested therapies, especially those of the vaccination propensity, rejection, and anti-vaccination movements. Although there are only a few systematic studies on this issue, the proper solutions of the Covid-19 should consider the psychological aspects of the acceptance and rejection of vaccination. We may consider that the first waves of the Covid-19 epidemic created situations requiring altered psychological coping, to which psychological research responded primarily by examining the epidemiological situation, illness, and the resulting psychological aspects of lifestyle (treatment of social isolation, stress management, anxiety, depression). Therefore, scientific data on risk perception and psychological factors of vaccine acceptance may contribute to preparedness for globally predicted epidemics and decision-making processes.

Abstract:In a recent paper in Cambridge Quarterly of Healthcare Ethics on the necessary conditions for morally responsible animal research David DeGrazia and Jeff Sebo claim that the key requirements for morally responsible animal research are (1) an assertion of sufficient net benefit, (2) a worthwhile-life condition, and (3) a no-unnecessary-harm condition. With regards to the assertion (or expectation) of sufficient net benefit (ASNB), the authors claim that morally responsible research offers unique benefits to humans that outweigh the costs and harms to humans and animals. In this commentary we will raise epistemic, practical, and ethical challenges to DeGrazia and Sebo’s emphasis on benefits in the prospective assessment of research studies involving animals. We do not disagree with DeGrazia and Sebo that, at the theoretical level, the benefits of research justify our using animals. Our contribution intends to clarify, at the practical level, how we should understand benefits in the prospective assessment and moral justification of animal research. We argue that ASNB should be understood as an assessment of Expectation of Knowledge Production (EKP) in the prospective assessment and justification of animal research. EKP breaks down into two further claims: (1) that morally responsible research generates knowledge worth having and (2) that morally responsible research is designed and executed to produce generalizable knowledge. We understand the condition called knowledge worth having as scientists’ testing a hypothesis that, whether verified or falsified, advances an important interest, and production of generalizable knowledge in terms of scientific integrity. Generalizable knowledge refers to experimental results that generalize to a larger population beyond the animals studied. Generalizable scientific knowledge is reliable, replicable, and accurately descriptive. In sum, morally responsible research will be designed and carefully executed to successfully test a hypothesis that, whether verified or falsified, advances important interests. Our formulation of EKP, crucially, does not require further showing that an experiment involving animals will produce societal benefits.

Questions regarding the nature and source of consciousness and individual agency to make decisions have enormous practical implications that include human health and wellbeing, social policy, and economics. Ethical issues involving the ability for patients to make conscious, informed choices, such as in cases of dementia or coma, abound, and the health implications of individual choice on public wellbeing are becoming increasingly important as population densities increase. Furthermore, the use of animals for drug testing presents moral dilemmas related to our concepts of consciousness, pain, and consent. While philosophers have long debated aspects of consciousness, the means to scientifically address specific questions regarding regional and cellular functions of the brain are constantly emerging, as are new theories of physical laws and particle interactions which allow for the formation of new hypotheses of the source of consciousness. These emerging capabilities and hypotheses are increasingly able to be subjected to methodological scrutiny by the scientific community. To facilitate open discussion and advances in investigations regarding the nature of consciousness, this Topical Collection is intended to provide a peer-reviewed space to discuss or propose falsifiable hypotheses of consciousness in a full range of systems, using methods across disciplines of biology, physics, computer science, and philosophy of science that can inform such a discussion, while emphasizing the role that our conception of consciousness has on human health, society, and policy.

Abstract BACKGROUND In pre-implantation genetic testing (PGT), fertile couples undergo IVF with genetic testing of embryos to avoid conceptions with a genetic condition. There is an exponentially increasing uptake with over 600 applications listed by the Human Fertilisation and Embryology Authority in the UK. The psychological aspects of the decision-making process and the experience of PGT, however, are relatively underevaluated, with the potential to leave patients unsupported in their journeys. OBJECTIVE AND RATIONALE In this review, we aim to comprehensively report on every aspect of couples’ experiences of PGT. We consider what motivates users, the practical and ethical decisions involved and how couples navigate the decision-making process. Additionally, we report on the social and psychological impact on couples who are actively undergoing or have completed the PGT process. SEARCH METHODS A systematic search of English peer-reviewed journals of three computerized databases was undertaken following PRISMA guidelines. Studies that examined the motivations, attitudes, decision-making factors and experiences of patients who have been actively engaged in the PGT process were included. No restrictions were placed on study design or date of publication. Studies examining patients using PGT in a hypothetical context or solely using PGT for aneuploidy were excluded. Qualitative data were extracted using thematic analysis. OUTCOMES The main outcomes were patient motivations, deciding factors and attitudes, as well as the patient experience of coming to a decision and going through PGT. Patients were primarily motivated by the desire to have a healthy child and to avoid termination of pregnancy. Those with a sick child or previous experience of termination were more likely to use PGT. Patients also felt compelled to make use of the technology available, either from a moral responsibility to do so or to avoid feelings of guilt if not. The main factors considered when deciding to use PGT were the need for IVF and the acceptability of the technology, the financial cost of the procedure and one’s ethical standpoint on the creation and manipulation of embryos. There was a general consensus that PGT should be applied to lethal or severe childhood disease but less agreement on use for adult onset or variable expression conditions. There was an agreement that it should not be used to select for aesthetic traits and a frustration with the views of PGT in society. We report that couples find it difficult to consider all of the benefits and costs of PGT, resulting in ambivalence and prolonged indecision. After deciding on PGT use, we found that patients find the process extremely impractical and psychologically demanding. WIDER IMPLICATIONS This review aimed to summarize the current knowledge on how patients decide to use and experience PGT and to make suggestions to incorporate the findings into clinical practice. We cannot stress enough the importance of holistic evaluation of patients and thorough counselling prior to and during PGT use from a multidisciplinary team that includes geneticists, IVF clinicians, psychologists and also patient support groups. Large prospective studies using a validated psychological tool at various stages of the PGT process would provide an invaluable database for professionals to better aid patients in their decision-making and to improve the patient experience.

Authors have suggested that considering the ethical and social aspects of prenatal testing could be seen as an individual responsibility for patients, but no conceptual grounds have been provided for this thesis. I argue that Candace Cummins Gauthier’s account of “moral responsibility as a virtue”, developed as an attempt to reconcile notions of autonomy and community, provides such basis.

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic (preclinical) stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel (N=88; 44 participants in each country). Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results.

After the initial surge in cases of coronavirus (COVID-19), the outbreak has been managed differently in different countries. In the USA, it has been managed in many different ways between states, cities and even counties. This disparity is slowly becoming more and more pronounced with the advent of antibody testing. Although many argue over the potential merits of antibody testing as an immunity passport to allow the economy to restart, there are other implications that stand at the heart of the bioethical debate that are often overlooked. Particularly with COVID-19, there are many uncertainties and the discourse alone of antibodies presumes misinformation that may outweigh the epidemiological benefits of antibody testing. Although this paper does not seek to eliminate antibody testing, it does highlight the need for appropriate counselling both on a personal level with each patient but on a more global level. This moral standard of appropriate education is key to allowing the continued autonomy needed during this pandemic.

AbstractFollowing other contributions about the MAX accidents to this journal, this paper explores the role of betrayal and moral injury in safety engineering related to the U.S. federal regulator’s role in approving the Boeing 737MAX—a plane involved in two crashes that together killed 346 people. It discusses the tension between humility and hubris when engineers are faced with complex systems that create ambiguity, uncertain judgements, and equivocal test results from unstructured situations. It considers the relationship between moral injury, principled outrage and rebuke when the technology ends up involved in disasters. It examines the corporate backdrop against which calls for enhanced employee voice are typically made, and argues that when engineers need to rely on various protections and moral inducements to ‘speak up,’ then the ethical essence of engineering—skepticism, testing, checking, and questioning—has already failed.

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.

The UK government has put lateral flow antigen tests (LFATs) at the forefront of its strategy to scale-up testing in the coronavirus pandemic. However, evidence from a pilot trial using an LFAT to identify asymptomatic infections in the community suggested that the test missed over half of the positive cases in the tested population. This raises the question of whether it can be ethical to use an inaccurate test to guide public health measures. We begin by explicating different dimensions of test accuracy (sensitivity, specificity and predictive value), and why they matter morally, before highlighting key data from the Liverpool pilot. We argue that the poor sensitivity of the LFAT in this pilot trial suggests that there are important limitations to what we can expect these tests to achieve. A test with low sensitivity will provide false-negative results, and in doing so generate the risk of false assurance and its attendant moral costs. However, we also suggest that the deployment of an insensitive but specific test could identify many asymptomatic carriers of the virus who are currently being missed under existing arrangements. Having outlined ways in which the costs of false reassurance could potentially be mitigated, we conclude that the use of an insensitive LFAT in mass testing may be ethical if (1) it is used predominantly to identify positive cases, (2) it is a cost-effective method of achieving that goal and (3) if other public health tools can effectively prevent widespread false reassurance.

The aim of the research was to identify the role of extracurricular activities in the emotional and moral development of students at the universities of Aktobe and Orenburg in Prussia and Kazakhstan. To achieve this goal, research was carried out in three stages: Phase I- Analysis and Diagnosis- The stage included the definition of the systematic basis of research and the degree of problem of study in Kazakhstan and Russia, foreign literature and student education, analysis of the main provisions of the normative documents of the legislative, and the characteristics of the main positions of research, conceptual and class system. , Tasks, search hypotheses. At this stage, a number of methods and methods were adopted: analysis of theoretical sources, targeted educational supervision, questionnaire, and experiment testing. Phase II- Model Design- The trial phase during which the work system was conducted on the moral and spiritual composition of the student identity, the reform and preliminary analysis of the received facts was carried out. Search hypothesis selected. The data obtained was analyzed and interpreted. At this stage, a number of methods and techniques have been adopted: modeling, theoretical analysis, information synthesis, questionnaire, testing, skilled and experimental work, and methods of mathematical statistics. Phase III- Summary and Analysis- The stage is characterized by the final analysis of the results received during the skilled and experimental work, its methodology, the generalization, the formulation of research findings, and the recording of research in the form of thesis. The methods used at this stage were: mathematical data processing, tabulation and interpretation of the graph of the results received, comparative analysis. The study sample consisted of (89) respondents from Aktobe University, Orenburg in Russia and Kazakhstan, divided into three groups; two groups and two other groups with 29 students each. The study showed the following results: • Changes were made in a motivational standard and value for spiritual and moral formation: positive positive motives and aspiration for spiritual moral improvement were found in 74.7% of students (compared to 19.5% at the beginning of the experiment). Values ​​measured such as "freedom", "responsibility", "action", "education", "conscience", "mercy". • The student initiative in the social and educational practice of activities for us was an indicator of the positive change of the activity standard. • Extra-curricular activities are integrated in content and techniques and provide mutual enrichment of the spiritual ethical standards of the subject. • Extracurricular activities promote the inclusion of essential aspects of the spiritual and moral formation of the personality at the level of the subjects studied by the student. • The opportunities offered by extracurricular activities allow for the improvement of the spiritual and moral formation of the student, taking into account the requirements of modern science and practice.

Pathology and laboratory medicine are a key component of a patient’s healthcare. From academic care centres, community hospitals, to clinics across the country, pathology data are a crucial component of patient care. But for much of the modern era, pathology and laboratory medicine have been absent from health policy conversations. Though select members in the field have advocated for an enhanced presence of these specialists in policy conversations, little work has been done to thoroughly evaluate the moral and ethical obligations of the pathologist and the role they play in healthcare justice and access to care. In order to make any substantive improvements in access to care, pathology and laboratory medicine must have a seat at the table. Specifically, pathologists and laboratorians can assist in bringing about change through improving clinician test choice, continuing laboratory improvement programmes, promoting just advanced diagnostic distribution, triage testing and be good stewards of healthcare dollars, and recruiting a more robust laboratory workforce. In order to get to that point, much work has to be done in pathology education and the laboratory personnel training pipeline but there also needs to be adjustments at the system level to better involve this invaluable group of specialists in these policy conversations.

Abstract Background This is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable. Methods Using qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. Results From the eight objectives presented to the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results. Conclusions Our results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry.

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.

There is an expression, in recent Marvel superhero films, of a social anxiety about genetic science that, in part, replaces the social anxieties about nuclear weapons that can be detected in the comic books on which these films are based (Rutherford). Much of the analysis of superhero comics – and the films on which they are based – has focussed its attention on the anxieties contained within them about gender, sexuality, race, politics, and the nation. Surprisingly little direct critique is applied to the most obvious point of difference within those texts, namely the acquisition, display, and use of extra-ordinary abilities. These superhero films represent some of the ways that audiences come to understand genetics. I am interested in this essay in considering how the representation of genetic mutation, as an error in a bio-chemical code, is a key narrative device. Moreover, mutation is central to the way the films explore the social exclusion of characters who acquire super-abilities. My contention is that, in these Marvel comic films, extra-ordinary ability, and the anxieties expressed about those abilities, parallels some of the social and cultural beliefs about the disabled body. The impaired body thus becomes a larger trope for any deviation from the “normal” body and gives rise to the anxieties about deviation and deviance explored in these films. Impairment and illness have historically been represented as either a blessing or a curse – the source of revelation and discovery, or the site of ignominy. As Western culture developed, the confluence of Greek and Judeo-Christian stories about original sin and inherited punishment for parental digression resulted in the entrenchment of beliefs about bent and broken bodies as the locus of moral questions (and answers) about the abilities and use of the human body (Sontag 47). I want to explore, firstly, in the film adaptations of the Marvel comics X-Men, Spiderman, Fantastic Four, and The Hulk, the representation of changes to the body as the effect of invisible bio-chemical states and processes. It has been impossible to see DNA, whether with the human eye or with technical aid; the science of genetics is largely based on inference from other observations. In these superhero films, the graphic display of DNA and genetic restructuring is strikingly large. This overemphasis suggests both that the genetic is a key narrative impetus of the films and that there is something uncertain or disturbing about genetic science. One such concern about genetic science is identifying the sources of oppression that might underlie the, at times understandable, desire to eliminate disease and congenital defect through changes to the genetic code or elimination of genetic error. As Adrienne Asch states, this urge to eliminate disease and impairment is problematic: Why should it be acceptable to avoid some characteristics and not others? How can the society make lists of acceptable and unacceptable tests and still maintain that only disabling traits, and not people who live with those traits, are to be avoided? (339) Asch’s questioning ends with the return to the moral concerns that have always circulated around the body, and in particular a body that deviates from a norm. The maxim “hate the sin, not the sinner” is replaced by “eradicate the impairment, not the impaired”: it is some kind of lack of effort or resourcefulness on the part of the impaired that is detectable in the presence of the impairment. This replacement of sin by science is yet another example of the trace of the body as the site of moral arguments. As Bryan Turner argues, categories of disease, and by association impairment, are intrinsic to the political discourse of Western societies about otherness and exclusion (Turner 216). It is not surprising then, that characters that experience physical changes caused by genetic mutation may take on for themselves the social shame that is part of the exclusion process. As genetic science has increasingly infiltrated the popular imagination and thus finds expression in cinema, so too has this concern of shame and guilt become key to the narrative tension of films that link changes in the genetic code to the acquisition of super-ability. In the X-Men franchise, the young female character Rogue (Anna Paquin), acquires the ability to absorb another’s life force (and abilities), and she seeks to have her genetic code resequenced in order to be able to touch others, and thus by implication have a “normal” life. In X2 (Bryan Singer, 2003), Rogue’s boyfriend, Iceman (Shawn Ashmore), who has been largely excluded from her touch, returns home with other mutants. After having hidden his mutant abilities from his family, he finally confesses to them the truth about himself. His shocked mother turns to him and asks: “Have you tried not being a mutant?” Whilst this moment has been read as an expression of anxiety about homosexuality (“Pop Culture: Out Is In”; Vary), it also marks a wider social concern about otherness, including disability, and its attendant social exclusion. Moreover, this moment reasserts the paradigm of effort that underlies anxieties about deviations from the norm: Iceman could have been normal if only he had tried harder, had a different girlfriend, remained at home, sought more knowledge, or had better counsel. Science, and more specifically genetic science, is suggested in many of these films as the site of bad counsel. The narratives of these superhero stories, almost without exception, begin or hinge on some kind of mistake by scientists – the escaped spider, the accident in the laboratory, the experiment that gets out of control. The classic image of the mad scientist or Doctor Frankenstein type, locked away in his laboratory is reflected in the various scenes in all these films, in which the scientists are separated from wider society. In Fantastic 4 (Tim Story, 2005), the villain, Dr Von Doom (Julian McMahon), is located at the top of a large multi-story building, as too are the heroes. Their separation from the rest of society is made even more dramatic by placing the site of their exposure to cosmic radiation, the source of the genetic mutation, in a space station that is empty of anyone else except the five main characters whose bodies will be altered. In Spiderman (Sam Raimi, 2002), the villain is a scientist whose experiments are kept secret by the military, emphasising the danger inherent in his work. The mad-scientist imagery dominates the representation of Bruce Bannor’s father in Hulk (Ang Lee, 2003), whose experiments have altered his genetic code, and that alteration in genetic structure has subsequently been passed onto his son. The Fantastic 4 storyline returns several times to the link between genetic mutation and the exposure to cosmic radiation. Indeed, it is made explicit that human existence – and by implication the human body and abilities – is predicated on this cosmic radiation as the source of transformations that formed the human genetic code. The science of early biology thus posits this cosmic radiation as the source of what is “normal,” and it is this appeal to the cosmos – derived from the Greek kosmos meaning “order” – that provides, in part, the basis on which to value the current human genetic code. This link to the cosmic is also made in the opening sequence of X-Men in which the following voice-over is heard as we see a ball of light form. This light show is both a reminder of the Big Bang (the supposed beginning of the universe which unleased vast amounts of radiation) and the intertwining of chromosomes seen inside biological nuclei: Mutation, it is the key to our evolution. It has enabled us to evolve from a single celled organism to the dominant species on the planet. This process is slow, normally taking thousands and thousands of years. But every few hundred millennia evolution leaps forward. Whilst mutation may be key to human evolution and the basis for the dramatic narratives of these superhero films, it is also the source of social anxiety. Mutation, whilst derived from the Latin for “change,” has come to take on the connotation of an error or mistake. Richard Dawkins, in his celebrated book The Selfish Gene, compares mutation to “an error corresponding to a single misprinted letter in a book” (31). The language of science is intended to be without the moral overtones that such words as “error” and “misprint” attract. Nevertheless, in the films under consideration, the negative connotations of mutation as error or mistake, are, therefore, the source of the many narrative crises as characters seek to rid themselves of their abilities. Norman Osborn (Willem Dafoe), the villain of Spiderman, is spurred on by his belief that human beings have not achieved their potential, and the implication here is that the presence of physical weakness, illness, and impairment is the supporting evidence. The desire to return the bodies of these superheroes to a “normal” state is best expressed in_ Hulk_, when Banner’s father says: “So you wanna know what’s wrong with him. So you can fix him, cure him, change him.” The link between a mistake in the genetic code and the disablement of the these characters is made explicit when Banner demands from his father an explanation for his transformation into the Hulk – the genetic change is explicitly named a deformity. These films all gesture towards the key question of just what is the normal human genetic code, particularly given the way mutation, as error, is a fundamental tenet in the formation of that code. The films’ focus on extra-ordinary ability can be taken as a sign of the extent of the anxiety about what we might consider normal. Normal is represented, in part, by the supporting characters, named and unnamed, and the narrative turns towards rehabilitating the altered bodies of the main characters. The narratives of social exclusion caused by such radical deviations from the normal human body suggest the lack of a script or language for being able to talk about deviation, except in terms of disability. In Spiderman, Peter Parker (Tobey Maguire) is doubly excluded in the narrative. Beginning as a classic weedy, glasses-wearing, nerdy individual, unable to “get the girl,” he is exposed to numerous acts of humiliation at the commencement of the film. On being bitten by a genetically altered spider, he acquires its speed and agility, and in a moment of “revenge” he confronts one of his tormentors. His super-ability marks him as a social outcast; his tormentors mock him saying “You are a freak” – the emphasis in speech implying that Parker has never left a freakish mode. The film emphasises the physical transformation that occurs after Parker is bitten, by showing his emaciated (and ill) body then cutting to a graphic depiction of genes being spliced into Parker’s DNA. Finally revealing his newly formed, muscular body, the framing provides the visual cues as to the verbal alignment of these bodies – the extraordinary and the impaired bodies are both sources of social disablement. The extreme transformation that occurs to Ben Grimm (Michael Chiklis), in Fantastic 4, can be read as a disability, buying into the long history of the disabled body as freak, and is reinforced by his being named “The Thing.” Socially, facial disfigurement may be regarded as one of the most isolating impairments; for example, films such as The Man without a Face (Mel Gibson, 1993) explicitly explore this theme. As the only character with a pre-existing relationship, Grimm’s social exclusion is reinforced by the rejection of his girlfriend when she sees his face. The isolation in naming Ben Grimm as “The Thing” is also expressed in the naming of Bruce Banner’s (Eric Bana) alter ego “Hulk.” They are grossly enlarged bodies that are seen as grotesque mutations of the “normal” human body – not human, but “thing-like.” The theme of social exclusion is played alongside the idea that those with extra-ordinary ability are also emblematic of the evolutionary dominance of a superior species of which science is an example of human dominance. The Human Genome Project, begun in 1990, and completed in 2003, was in many ways the culmination of a century and a half of work in biochemistry, announcing that science had now completely mapped the human genome: that is, provided the complete sequence of genes on each of the 46 chromosomes in human cells. The announcement of the completed sequencing of the human genome led to, what may be more broadly called, “genomania” in the international press (Lombardo 193). But arguably also, the continued announcements throughout the life of the Project maintained interest in, and raised significant social, legal, and ethical questions about genetics and its use and abuse. I suggest that in these superhero films, whose narratives centre on genetic mutation, that the social exclusion of the characters is based in part on fears about genetics as the source of disability. In these films deviation becomes deviance. It is not my intention to reduce the important political aims of the disability movement by equating the acquisition of super-ability and physical impairment. Rather, I suggest that in the expression of the extraordinary in terms of the genetic within the films, we can detect wider social anxieties about genetic science, particularly as the representations of that science focus the audience’s attention on mutation of the genome. An earlier film, not concerned with superheroes but with the perfectibility of the human body, might prove useful here. Gattaca (Andrew Nicol, 1997), which explores the slippery moral slope of basing the value of the human body in genetic terms (the letters of the title recall the chemicals that structure DNA, abbreviated to G, A, T, C), is a powerful tale of the social consequences of the primacy of genetic perfectibility and reflects the social and ethical issues raised by the Human Genome Project. In a coda to the film, that was not included in the theatrical release, we read: We have now evolved to the point where we can direct our own evolution. Had we acquired this knowledge sooner, the following people may never have been born. The screen then reveals a list of significant people who were either born with or acquired physical or psychological impairments: for example, Abraham Lincoln/Marfan Syndrome, Jackie Joyner-Kersee/Asthma, Emily Dickinson/Manic Depression. The audience is then given the stark reminder of the message of the film: “Of course the other birth that may never have taken place is your own.” The social order of Gattaca is based on “genoism” – discrimination based on one’s genetic profile – which forces characters to either alter or hide their genetic code in order to gain social and economic benefit. The film is an example of what the editors of the special issue of the Florida State University Law Journal on genetics and disability note: how we look at genetic conditions and their relationship to health and disability, or to notions of “normalcy” and “deviance,” is not strictly or even primarily a legal matter. Instead, the issues raised in this context involve ethical considerations and require an understanding of the social contexts in which those issues appear. (Crossley and Shepherd xi) Implicit in these commentators’ concern is the way an ideal body is assumed as the basis from which a deviation in form or ability is measured. These superhero films demonstrate that, in order to talk about super-ability as a deviation from a normal body, they rely on disability scripts as the language of deviation. Scholars in disability studies have identified a variety of ways of talking about disability. The medical model associates impairment or illness with a medical tragedy, something that must be cured. In medical terms an error is any deviation from the norm that needs to be rectified by medical intervention. By contrast, in the social constructivist model, the source of disablement is environmental, political, cultural, or economic factors. Proponents of the social model do not regard impairment as equal to inability (Karpf 80) and argue that the discourses of disability are “inevitably informed by normative beliefs about what it is proper for people’s bodies and minds to be like” (Cumberbatch and Negrine 5). Deviations from the normal body are classification errors, mistakes in social categorisation. In these films aspects of both the medical tragedy and social construction of disability can be detected. These films come at a time when disability remains a site of social and political debate. The return to these superheroes, and their experiences of exclusion, in recent films is an indicator of social anxiety about the functionality of the human body. And as the science of genetics gains increasing public representation, the idea of ability – and disability – that is, what is regarded as “proper” for bodies and minds, is increasingly related to how we regard the genetic code. As the twenty first century began, new insights into the genetic origins of disease and congenital impairments offered the possibility that the previous uncertainty about the provenance of these illnesses and impairments may be eliminated. But new uncertainties have arisen around the value of human bodies in terms of ability and function. This essay has explored the way representations of extra-ordinary ability, as a mutation of the genetic code, trace some of the experiences of disablement. A study of these superhero films suggests that the popular dissemination of genetics has not resulted in an understanding of ability and form as purely bio-chemical, but that thinking about the body as a bio-chemical code occurs within already present moral discourses of the body’s value. References Asch, Adrienne. “Disability Equality and Prenatal Testing: Contradictory or Compatible?” Florida State University Law Review 30.2 (2003): 315-42. Crossley, Mary, and Lois Shepherd. “Genes and Disability: Questions at the Crossroads.” Florida State University Law Review 30.2 (2003): xi-xxiii. Cumberbatch, Guy, and Ralph Negrine. Images of Disability on Television. London: Routledge, 1992. Dawkins, Richard. The Selfish Gene. 30th Anniversary ed. Oxford: Oxford UP, 2006. Karpf, A. “Crippling Images.” Framed: Interrogating Disability in the Media. Eds. A. Pointon and C. Davies. London: British Film Institute, 1997. 79-83. Lombardo, Paul A. “Taking Eugenics Seriously: Three Generations Of ??? Are Enough.” Florida State University Law Review 30.2 (2003): 191-218. “Pop Culture: Out Is In.” Contemporary Sexuality 37.7 (2003): 9. Rutherford, Adam. “Return of the Mutants.” Nature 423.6936 (2003): 119. Sontag, Susan. Illness as Metaphor. London: Penguin, 1988. Turner, Bryan S. Regulating Bodies. London: Routledge, 1992. Vary, Adam B. “Mutant Is the New Gay.” Advocate 23 May 2006: 44-45. Citation reference for this article MLA Style Mantle, Martin. "“Have You Tried Not Being a Mutant?”: Genetic Mutation and the Acquisition of Extra-ordinary Ability." M/C Journal 10.5 (2007). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0710/10-mantle.php>. APA Style Mantle, M. (Oct. 2007) "“Have You Tried Not Being a Mutant?”: Genetic Mutation and the Acquisition of Extra-ordinary Ability," M/C Journal, 10(5). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0710/10-mantle.php>.

Photo by Hush Naidoo Jade Photography on Unsplash INTRODUCTION In this collection of narratives, the authors describe their own experiences with and reflections on healthcare worker vaccine hesitancy. The narratives explore each author’s engagement with different communities experiencing vaccine hesitancy, touching on reasons for hesitancy, proposed solutions, and legal aspects. Author’s names appear above their narratives. l. Johanna T. Crane Vaccine hesitancy, defined as “a delay of acceptance or refusal of vaccination despite the availability of vaccination services,”[1] is a worldwide but locally shaped phenomenon that pre-dates the COVID-19 pandemic.[2] Contrary to some portrayals, vaccine hesitancy is not the same as the more absolute antivaccination stance, or what some call “anti-vax.” Many people who are hesitant are not ideologically opposed to vaccines. Hesitancy is also sometimes framed as anti-science, yet reluctance to vaccinate is often about managing risk, trustworthiness, and doubt in the context of uncertainty; it represents an effort to “talk back to science” about unaddressed needs and concerns.[3] In the US, the newness of the vaccines, the unprecedented speed at which they were developed, and their remaining under emergency use authorization at first complicated public confidence. Political polarization and racial and social inequality shape vaccine acceptance and public distrust as well. While vaccine acceptance has increased in the months since the vaccines first became available, many eligible individuals have not yet been vaccinated, including a significant number of healthcare workers.[4] Vaccine hesitancy among healthcare workers may seem surprising, especially given their frontline experience – I confess that it surprised me at first. But when I began interviewing health care workers for a study on COVID vaccine roll-out at community health centers, I learned to take a more complex view. Although the study was focused on patient vaccine access,[5] many of the frontline health care workers we spoke with also described hesitancy among some of their colleagues (and, in a few cases, themselves). From these conversations, I learned that these “healthcare heroes” are also regular people and members of communities. Their concerns about COVID vaccination often reflect the prevailing concerns advanced in their communities, such as worries about vaccine side effects and safety. Like other workers, some fear missing work and losing income, as not all healthcare employers offer paid time off for vaccination or recovery. (Importantly, reluctance to vaccinate is highest among healthcare workers in lower-paid positions with little job security, such as clerks, housekeepers, patient care assistants, and home health aides.)[6] For some healthcare workers of color, the protection offered by the vaccine sits in tension with both current and historical experiences of medical abuse and neglect. Some interviewees, fully vaccinated themselves, rejected the framework of “hesitancy” entirely, arguing that Black and Brown reluctance to be vaccinated first should be understood through the lens of “self-protection”. Due to the nature of their work, healthcare workers have faced great social pressure to vaccinate and vaccinate first. This is understandable, given that vaccination against COVID-19 protects not only workers themselves but aligns with the ethical duty to prevent harm to patients by reducing the risk of transmission in healthcare settings. When the FDA approved COVID-19 vaccines under emergency use authorization in December 2020, many healthcare workers were extremely grateful to be designated “1a” – the first group prioritized to receive the shots.[7] For many bioethicists, prioritization of healthcare workers represented a recognition of the extreme risks that many front-line workers had endured since the onset of the pandemic, including critical shortages in PPE. But it is important to remember that for some workers, going first may have felt like serving as guinea pigs for new vaccines that had yet to be granted full FDA approval. For these individuals, the expectation that they would vaccinate first may have felt like an additional risk rather than a reward. Healthcare workers who are hesitant to vaccinate may feel ashamed or be subject to shaming by others;[8] this may make it difficult to discuss their concerns in the workplace. Throughout the pandemic, healthcare workers have been lauded as “heroes”, and some healthcare employers have promoted vaccination among their workforce as a “heroic” action. This messaging implies that waiting to vaccinate is shameful or cowardly and is echoed in opinion pieces and op-eds describing unvaccinated people as “selfish” or “free riders.”[9] By fostering the proper dialogue, we can respond respectfully to hesitancy among healthcare workers while still working towards the goal of increased vaccination. We in the bioethics and medical community should be willing to listen to our colleagues’ concerns with respect. Top-down approaches aimed at “correcting” hesitancy cannot address the more fundamental issues of trust that are often at stake. Instead, there must be dialogue over time. Conversations with a trusted healthcare provider have a crucial role.[10] Blaming and shaming rhetoric, whether explicit or implicit, gets us nowhere – in fact, it likely moves us backward by likely exacerbating any existing distrust or resentment that workers may hold toward their employers.[11] Lastly, the onus of trust must be with institutions, not individuals. There is a lot of talk about getting communities of color, and Black people, particularly, to "trust" healthcare institutions and the COVID vaccines. This racializes trust and puts the burden on harmed communities rather than on institutions acting in trustworthy ways.[12] Dialogue, respect, and trustworthiness must guide us even in the new era of workplace mandates. Mandates make these strategies even more important as we look toward an uncertain future. As Heidi Larson, founder of the Vaccine Confidence Project, recently said, “We should not forget that we are making people's future history now. Are people going to remember that they were treated respectfully and engaged?”[13] ll. Kara Simpson Since the release of the vaccine for COVID-19 in late 2020, there have been robust discussions within the medical community, the media, and political arenas about vaccine hesitancy among healthcare workers. The public became aware that healthcare workers, the first group to become eligible for the vaccine, were not rushing to “take the shot.” Many people’s opinions were aligned by race, ethnicity, socioeconomic status, and political affiliation. People of color were one of the first groups to be labeled vaccine hesitant as our experiences of distrust of the medical community and the politicization of the vaccine explained the low turnout.[14] It was not uncommon to hear, “this vaccine just came out; let’s wait and see if there are side effects.” Interestingly, many people in the healthcare community and in the public did not understand why healthcare workers of color remained hesitant. Trust is a vital component of any viable relationship, especially in the clinical realm. To have successful health outcomes, it is essential for clinicians to build trusting relationships with their patients and peers. Many people of color are distrustful towards the medical institution due to the years of systemic racism and abuses that they have experienced, witnessed, or learned about. Healthcare workers of color are not excluded from the experiences of their communities outside of work. In fact, I assert that healthcare of color may have an additional burden of hesitation because of their lived experiences of distrust in receiving care and inequality within their professional environment. These dual traumas can work in tandem to strengthen hesitancy. I assert that building trusting clinical relationships will address hesitancy over time. Currently, many healthcare workers are worried about vaccine mandates. For a group of people that have experienced intergenerational enslavement and marginalization, mandates feel coercive and serve as a reminder of how “lesser” bodies are considered unworthy of voice, fundamental human rights, independent decision making. To call the vaccine mandate paternalistic would be an understatement. An unintended result of vaccine mandates will be the reinforcement of hesitancy and distrust of the medical institution as trust and coercion cannot coexist. This mandate will give more power to the conspiracy theories and harm those who already do not seek or receive adequate health care because of systemic inequalities. Furthermore, mandates can also dissuade people of color from becoming healthcare workers, and others may leave the field. In essence, vaccine hesitancy is a symptom of a much larger problem: the distrust of the medical establishment. As bioethicists, our mission should be to support interventions that foster “trustworthiness” of the institutions rather than those that cause trauma. Several organizations have proposed mask mandates and weekly testing as a measure to protect the population at large and still respect the autonomy of the unvaccinated.[15] lll. Jennifer Breznay I work in a very large community teaching hospital in Brooklyn, and we were extremely hard hit by COVID in March 2020. I worked on inpatient medical units and witnessed a lot of suffering. And after nine months of fear and despair about COVID’s toll, I felt tremendous frustration in December when I heard that many healthcare workers would reject the vaccine. As the co-chair of the Bioethics Committee, I drafted a statement recommending vaccination for all employees. When the draft was revised and approved by the Bioethics Committee, I began to discuss it with employees, and I appreciated different perspectives I had not heard before. In the end, rather than releasing the statement, we directed our efforts at creating a dialogue. I also volunteer at a not-for-profit which operates seven early childhood education centers in Northern Brooklyn. The Executive Director invited me to collaborate on strategies to encourage staff vaccination, and we decided to offer a Zoom conference to 20 members of the staff. I was extremely nervous about how the audience would perceive me, a white doctor whom they did not know. I felt awkward about coming to them with an agenda. And there was also the question of whether I was an appropriate messenger compared to a person of color. Yet, I felt like I shouldn't back away from this. So, I chose to simply disclose my discomfort at the beginning of the Zoom. I said, “Thanks for having me. You know, as a white physician, I understand you might have concerns about trusting what I say. Four hundred years of inequity and abuse by the healthcare system can create a lot of mistrust, but I’m here to try to answer your questions.” Ultimately the Executive Director reported that the Zoom was successful in stimulating a lot of conversation among the staff about the vaccine. I think the critical piece is the intimate but open conversation, where you can elicit values. lV. Ashley L. Stewart In the rural areas of our state, healthcare institutions are inextricably tied to their communities. Rural hospitals hire from, serve, and function in the community where they are located. Successful implementation of a vaccine roll-out in such rural areas requires explicit recognition of the role and influence of the community. After identifying issues common to the area, rural institutions can address them. Even when rural institutions find that healthcare worker concerns seem to be unique or personal, they are often related to the larger concerns of the community.[16] Community-based increased vaccine hesitancy may coincide with an underlying issue, such as lack of information rather than principled or experience-based resistance.[17] When the vaccines became available, rural vaccination coordinators encountered a wealth of misinformation that left many people initially undecided. Compounding this lack of information, workers expressed a sense of fear about the professional consequences of voicing concerns, especially in tight-knit communities. Many workers expressed concern about being judged merely for sharing their questions or decisions.[18] They also felt that saying or doing something to promote the value of vaccination might change their relationship with members of the community where they live and work.[19] As there was a fear of engaging in productive conversations, it was difficult for them to find valuable information, and the lack of information discouraged them from being vaccinated. Vaccine coordinators wanted to get information to the entire community based on the most current research and release unbiased, consistent, and timely information from sources all people in the community could trust, including from multiple sources at once. Communication must focus on answering many types of questions, which must often be done in private or anonymously. Where poorly supported or incorrect information is widely available, sharing objective information is crucial to turning the tide of distrust. If the healthcare community dismisses concerns or assumes that answering questions based on misinformation is a waste of time, the community-based institutions will further the distrust. Some may feel that vaccine coordinators should not address misinformation directly, yet avoidance has been widely unsuccessful.[20] Being respectful and non-judgmental in answering questions posed by people who do not know what is true can be hard, but in rural communities, answering completely and honestly without judgment is a critical component of any effort to inform people. Telling people to get vaccinated “for the greater good” can sound the same as being told not to get a vaccine because it is “bad” if both sources of information fail to back up their claims. Ultimately rural institutions are respected because they are a resource to their communities, a priority we must preserve. It is also critical to treat everyone respectfully regardless of vaccine status.[21] People may perceive mandates, divisive policies, or disrespectful treatment of people based on vaccination status as discriminatory or coercive, weakening the appeal of vaccination. Such practices may make people less trusting and more anchored to their position as they come to see vaccination proponents as untrustworthy or authoritarian. We must work to maintain respect for human autonomy. Using unethical means to achieve even a just end will not lead to a “greater good” but rather to the perception that people in positions of authority would achieve a result “by any means necessary.” V. David N. Hoffman The central moral quandary that arises whenever vaccine hesitancy among healthcare workers is discussed is whether workers who refuse to get vaccinated should or could be fired. We should clarify that we are applying a definition of mandate in the employment context for private employers, the violation of which results in loss of employment. Government-controlled provider organizations are just now weighing in on this topic and are generally pursuing strategies that impose periodic, usually weekly, testing requirements for those workers who decline to get vaccinated. In the private sector, employers can require their employees to do a great many things as a condition of employment, and one of them is to get vaccinated against COVID -19. In the most prominent case to date, just such a mandate gave rise to a lawsuit in Texas involving Houston Methodist Hospital. In that case, 170 employees asserted that an employer should not be allowed to force them to get vaccinated. The judge held that, while no employer can force an employee to get vaccinated, no employer is obligated to continue the employment of any employee who declines to follow rules established by that employer, including the obligation to get vaccinated.[22] In Texas, what the judge said is you are not being forced to get vaccinated, but your employer is allowed to set limits and conditions on employment, including vaccination. Employees do not have an obligation to get vaccinated, but they also have no right to their jobs. That is because of a widely misunderstood legal concept: “employment at will.” Employment at will sounds like a rule that employees can do what they want at work, but in fact, employment at will means only that you can quit your job whenever you want (we do not permit indentured servitude). At the same time, your employer can fire you at any time, for any reason or no reason, unless the reason is a pretext and involves one of the protected statuses (race, color, religion, sex, or national origin, and in some jurisdictions gender orientation, gender identity). Generally, any employers, including hospitals, can decide that if someone is not willing to get a vaccination, or if they are not willing to complete sexual harassment training or participate in the hospital’s infection control program, that is the employee’s right, but it will mean that an employer can similarly decline to continue providing employment. The evolution of this hesitancy discussion will be influenced by the narrower debate playing out in the court of public opinion, and the courts of law, over the enforceability of New York’s recently enacted vaccine mandate. Regardless of whether that mandate survives, with or without medical and religious exemptions, healthcare employers will be left with a profound ethical dilemma. At the end of all the litigation, if there is a religious exemption, employers will always be burdened with the responsibility to determine whether an individual employee has asserted a genuine and sincere religious objection to vaccination and whether the employer is able to provide an accommodation that is safe and effective in protecting the interests of co-workers and patients. The anticipated federal mandate, which reportedly will have a test/mask alternative, will only make this ethical task more challenging. This leads to the final point in this analysis, which is that while private employers, including hospitals, can deprive an individual of their employment if those individuals refuse to get vaccinated, just because an employer can do so does not mean it should do so.[23] - [1] MacDonald NE. Vaccine hesitancy: Definition, scope and determinants. Vaccine. 2015;33(34):4161-4164. doi:10.1016/j.vaccine.2015.04.036 [2] Larson HJ, de Figueiredo A, Xiahong Z, et al. The State of Vaccine Confidence 2016: Global Insights Through a 67-Country Survey. EBioMedicine. 2016;12:295-301. doi:10.1016/j.ebiom.2016.08.042 [3] Larson H. Stuck: How Vaccine Rumors Start - and Why They Don’t Go Away. Oxford University Press; 2020; Benjamin R. Informed Refusal: Toward a Justice-based Bioethics. Sci Technol Hum Values. 2016;41(6):967-990. doi:10.1177/0162243916656059 [4] Deepa Shivaram, In The Fight Against COVID, Health Workers Aren't Immune To Vaccine Misinformation September 18, 2021. NPR Special Series: The Coronavirus. https://www.npr.org/2021/09/18/1037975289/unvaccinated-covid-19-vaccine-refuse-nurses-heath-care-workers [5] Crane JT, Pacia D, Fabi R, Neuhaus C, and Berlinger N. Advancing Covid vaccination equity at Federally Qualified Health Centers: A rapid qualitative review. Accepted and awaiting publication at JGIM. [6] Ashley Kirzinger. “KFF/The Washington Post Frontline Health Care Workers Survey - Vaccine Intentions.” KFF, 22 Apr. 2021, https://www.kff.org/report-section/kff-washington-post-frontline-health-care-workers-survey-vaccine-intentions/. [7] Johanna Crane, Samuel Reis-Dennis and Megan Applewhite. “Prioritizing the ‘1a’: Ethically Allocating Scarce Covid Vaccines to Health Care Workers.” The Hastings Center, 21 Dec. 2020, https://www.thehastingscenter.org/prioritizing-the-1a-ethically-allocating-covid-vaccines-to-health-care-workers/. [8] “'I'm Not an Anti-Vaxxer, but...' US Health Workers' Vaccine Hesitancy Raises Alarm.” The Guardian, Guardian News and Media, 10 Jan. 2021, https://www.theguardian.com/world/2021/jan/10/coronavirus-covid-19-vaccine-hesitancy-us-health-workers. [9] Gerson M. If you are healthy and refuse to take the vaccine, you are a free-rider. Washington Post. April 15, 2021. [10] Crane JT, Pacia D, Fabi R, Neuhaus C, and Berlinger N. Advancing Covid vaccination equity at Federally Qualified Health Centers: A rapid qualitative review. Accepted and awaiting publication at JGIM. [11] Larson H. Stuck : How Vaccine Rumors Start - and Why They Don’t Go Away. Oxford University Press; 2020. [12] Benjamin R. Race for Cures: Rethinking the Racial Logics of ‘Trust’ in Biomedicine. Sociology Compass. 2014;8(6):755-769. doi:10.1111/soc4.12167; Warren RC, Forrow L, David Augustin Hodge S, Truog RD. Trustworthiness before Trust — Covid-19 Vaccine Trials and the Black Community. N Engl J Med. Published online October 16, 2020. doi:10.1056/NEJMp2030033 [13] Offri D. Heidi Larson, Vaccine Anthropologist. New Yorker. Published online June 12, 2021. Accessed August 11, 2021. https://www.newyorker.com/science/annals-of-medicine/heidi-larson-vaccine-anthropologist [14] Razai M S, Osama T, McKechnie D G J, Majeed A. Covid-19 Vaccine Hesitancy Among Ethnic Minority Groups. BMJ 2021; 372 :n513 doi:10.1136/bmj.n513 [15] Dasgupta, Sharoda, et al. “Differences in Rapid Increases in County-Level COVID-19 Incidence by Implementation of Statewide Closures and Mask Mandates — United States, June 1–September 30, 2020.” Annals of Epidemiology, vol. 57, Sept. 2021, pp. 46–53., https://doi.org/10.1016/j.annepidem.2021.02.006. [16] Do, Tuong Vi C et al. “COVID-19 Vaccine Acceptance Among Rural Appalachian Healthcare Workers (Eastern Kentucky/West Virginia): A Cross-Sectional Study.” Cureus vol. 13,8 e16842. 2 Aug. 2021, doi:10.7759/cureus.16842; Danabal, K.G.M., Magesh, S.S., Saravanan, S. et al. Attitude towards COVID 19 vaccines and vaccine hesitancy in urban and rural communities in Tamil Nadu, India – a community-based survey. BMC Health Serv Res 21, 994 (2021). https://doi.org/10.1186/s12913-021-07037-4 [17] Scott C. Ratzan MD, MPA, MA, Lawrence O. Gostin JD, Najmedin Meshkati PhD, CPE, Kenneth Rabin PhD & Ruth M. Parker MD (2020) COVID-19: An Urgent Call for Coordinated, Trusted Sources to Tell Everyone What They Need to Know and Do, Journal of Health Communication, 25:10, 747-749, DOI: 10.1080/10810730.2020.1894015 [18] Huang, Pien. “Some Health Care Workers Are Wary of Getting COVID-19 Vaccines.” NPR, NPR, 1 Dec. 2020, https://www.npr.org/sections/health-shots/2020/12/01/940158684/some-health-care-workers-are-wary-of-getting-covid-19-vaccines. Portnoy, Jenna. “Several Hundred Virginia Health-Care Workers Have Been Suspended or Fired over Coronavirus Vaccine Mandates.” The Washington Post, WP Company, 4 Oct. 2021, https://www.washingtonpost.com/local/covid-vaccine-mandate-hospitals-virginia/2021/10/01/b7976d16-21ff-11ec-8200-5e3fd4c49f5e_story.html. [19] Jennifer A. Lueck & Alaina Spiers (2020) Which Beliefs Predict Intention to Get Vaccinated against COVID-19? A Mixed-Methods Reasoned Action Approach Applied to Health Communication, Journal of Health Communication, 25:10, 790-798, DOI: 10.1080/10810730.2020.1865488 [20] Lockyer, Bridget, et al. “Understanding Covid-19 Misinformation and Vaccine Hesitancy in Context: Findings from a Qualitative Study Involving Citizens in Bradford, UK.” Health Expectations, vol. 24, no. 4, 4 May 2021, pp. 1158–1167., https://doi.org/10.1101/2020.12.22.20248259. Scott C. Ratzan & Ruth M. Parker (2020) Vaccine Literacy—Helping Everyone Decide to Accept Vaccination, Journal of Health Communication, 25:10, 750-752, DOI: 10.1080/10810730.2021.1875083. [21] Zimmerman, Anne. Columbia Academic Commons, 2020, Toward a Civilized Vaccination Discussion: Abandoning the False Assumption That Scientific Goals Are Shared by All, https://academiccommons.columbia.edu/doi/10.7916/d8-rzh0-1f73. [22] Bridges, et al v. Houston Methodist Hospital et al, https://docs.justia.com/cases/federal/districtcourts/texas/txsdce/4:2021cv01774/1830373/18 [23] David N. Hoffman, “Vaccine Mandates for Health Care Workers Raise Several Ethical Dilemmas,” Hasting Center Bioethics Forum. August 2021. https://www.thehastingscenter.org/vaccine-mandates-for-health-care-workers-raise-several-ethical-dilemmas/

There is a moment in Al Gore’s 2006 documentary An Inconvenient Truth devised to expose the sheer audacity of fossil fuel lobby groups in the United States. In their attempts to address significant scientific consensus and growing public concern over climate change, these groups are resorting to what Gore’s film suggests are grotesque distortions of fact. A particular example highlighted in the film is the Competitive Enterprise Institute’s (CPE—a lobby group funded by ExxonMobil) “pro” energy industry advertisement: “Carbon dioxide”, the ad states. “They call it pollution, we call it life.” While on the one hand employing rhetoric against the “inconvenient truth” that carbon dioxide emissions are ratcheting up the Earth’s temperature, these advertisements also pose a question – though perhaps unintended – that is worth addressing. Where does life reside? This is not an issue of essentialism, but relates to the claims, materials and technologies through which life as a political object emerges. The danger of entertaining the vested interests of polluting industry in a discussion of climate change and its biopolitics is countered by an imperative to acknowledge the ways in which multiple positions in the climate change debate invoke and appeal to ‘life’ as the bottom line, or inviolable interest, of their political, social or economic work. In doing so, other questions come to the fore that a politics of climate change framed in terms of moral positions or competing values will tend to overlook. These questions concern the manifold practices of life that constitute the contemporary terrain of the political, and the actors and instruments put in this employ. Who speaks for life? And who or what produces it? Climate change as a matter of concern (Latour) has gathered and generated a host of experts, communities, narratives and technical devices all invested in the administration of life. It is, as Malcom Bull argues, “the paradigmatic issue of the new politics,” a politics which “draws people towards the public realm and makes life itself subject to the caprices of state and market” (2). This paper seeks to highlight the politics of life that have emerged around climate change as a public issue. It will argue that these politics appear in incremental and multiple ways that situate an array of actors and interests as active in both contesting and generating the terms of life: what life is and how we come to know it. This way of thinking about climate change debates opposes a prevalent moralistic framework that reads the practices and discourses of debate in terms of oppositional positions alone. While sympathies may flow in varying directions, especially when it comes to such a highly charged and massively consequential issue as climate change, there is little insight to be had from charging the CPE (for example) with manipulating consumers, or misrepresenting well-known facts. Where new and more productive understandings open up is in relation to the fields through which these gathering actors play out their claims to the project of life. These fields, from the state, to the corporation, to the domestic sphere, reveal a complex network of strategies and devices that seek to secure life in constantly renovated terms. Life Politics Biopolitical scholarship in the wake of Foucault has challenged life as a pre-given uncritical category, and sought to highlight the means through which it is put under question and constituted through varying and composing assemblages of practitioners and practices. Such work regards the project of human well-being as highly complex and technical, and has undertaken to document this empirically through close attention to the everyday ecologies in which humans are enmeshed. This is a political and theoretical project in itself, situating political processes in micro, as well as macro, registers, including daily life as a site of (self) management and governance. Rabinow and Rose refer to biopolitical circuits that draw together and inter-relate the multiple sites and scales operative in the administration of life. These involve not just technologies, rationalities and regimes of authority and control, but also politics “from below” in the form of rights claims and community formation and agitation (198). Active in these circuits, too, are corporate and non-state interests for whom the pursuit of maximising life’s qualities and capabilities has become a concern through which “market relations and shareholder value” are negotiated (Rabinow and Rose 211). As many biopolitical scholars argue, biopower—the strategies through which biopolitics are enacted—is characteristic of the “disciplinary neo-liberalism” that has come to define the modern state, and through which the conduct of conduct is practiced (Di Muzio 305). Foucault’s concept of governmentality describes the devolution of state-based disciplinarity and sovereignty to a host of non-state actors, rationalities and strategies of governing, including the self-managing subject, not in opposition to the state, but contributing to its form. According to Bratich, Packer and McCarthy, everyday life is thus “saturated with governmental techniques” (18) in which we are all enrolled. Unlike regimes of biopolitics identified with what Agamben terms “thanopolitics”—the exercise of biopower “which ultimately rests on the power of some to threaten the death of others” (Rabinow and Rose 198), such as the Nazi’s National Socialism and other eugenic campaigns—governmental arts in the service of “vitalist” biopolitics (Rose 1) are increasingly diffused amongst all those with an “interest” in sustaining life, from organisations to individuals. The integration of techniques of self-governance which ask the individual to work on themselves and their own dispositions with State functions has broadened the base by which life is governed, and foregrounded an unsettled terrain of life claims. Rose argues that medical science is at the forefront of these contemporary biopolitics, and to this effect “has […] been fully engaged in the ethical questions of how we should live—of what kinds of creatures we are, of the kinds of obligations that we have to ourselves and to others, of the kinds of techniques we can and should use to improve ourselves” (20). Asking individuals to self-identify through their medical histories and bodily specificities, medical cultures are also shaping new political arrangements, as communities connected by shared genetics or physical conditions, for instance, emerge, evolve and agitate according to the latest medical knowledge. Yet it is not just medicine that provokes ethical work and new political forms. The environment is a key site for life politics that entails a multi-faceted discourse of obligations and entitlements, across fields and scales of engagement. Calculating Environments In line with neo-liberal logic, environmental discourse concerned with ameliorating climate change has increasingly focused upon the individual as an agent of self-monitoring, to both facilitate government agendas at a distance, and to “self-fashion” in the mode of the autonomous subject, securing against external risks (Ong 501). Climate change is commonly represented as such a risk, to both human and non-human life. A recent letter published by the Royal Australasian College of Physicians in two leading British medical journals, named climate change as the “biggest global health threat of the twenty-first century” (Morton). As I have argued elsewhere (Potter), security is central to dominant cultures of environmental governance in the West; these cultures tie sustainability goals to various and interrelated regimes of monitoring which attach to concepts of what Clark and Stevenson call “the good ecological citizen” (238). Citizenship is thus practiced through strategies of governmentality which call on individuals to invest not just in their own well-being, but in the broader project of life. Calculation is a primary technique through which modern environmental governance is enacted; calculative strategies are seen to mediate risk, according to Foucault, and consequently to “assure living” (Elden 575). Rationalised schemes for self-monitoring are proliferating under climate change and the project of environmentalism more broadly, something which critics of neo-liberalism have identified as symptomatic of the privatisation of politics that liberal governmentality has fostered. As we have seen in Australia, an evolving policy emphasis on individual practices and the domestic sphere as crucial sites of environmental action – for instance, the introduction of domestic water restrictions, and the phasing out of energy-inefficient light bulbs in the home—provides a leading discourse of ethico-political responsibility. The rise of carbon dioxide counting is symptomatic of this culture, and indicates the distributed fields of life management in contemporary governmentality. Carbon dioxide, as the CPE is keen to point out, is crucial to life, but it is also—in too large an amount—a force of destruction. Its management, in vitalist terms, is thus established as an effort to protect life in the face of death. The concept of “carbon footprinting” has been promoted by governments, NGOs, industry and individuals as a way of securing this goal, and a host of calculative techniques and strategies are employed to this end, across a spectrum of activities and contexts all framed in the interests of life. The footprinting measure seeks to secure living via self-policed limits, which also—in classic biopolitical form—shift previously private practices into a public realm of count-ability and accountability. The carbon footprint, like its associates the ecological footprint and the water footprint, has developed as a multi-faceted tool of citizenship beyond the traditional boundaries of the state. Suggesting an ecological conception of territory and of our relationships and responsibilities to this, the footprint, as a measure of resource use and emissions relative to the Earth’s capacities to absorb these, calculates and visualises the “specific qualities” (Elden 575) that, in a spatialised understanding of security, constitute and define this territory. The carbon footprint’s relatively simple remit of measuring carbon emissions per unit of assessment—be that the individual, the corporation, or the nation—belies the ways in which life is formatted and produced through its calculations. A tangled set of devices, practices and discourses is employed to make carbon and thus life calculable and manageable. Treading Lightly The old environmental adage to “tread lightly upon the Earth” has been literalised in the metaphor of the footprint, which attempts both to symbolise environmental practice and to directly translate data in order to meaningfully communicate necessary boundaries for our living. The World Wildlife Fund’s Living Planet Report 2008 exemplifies the growing popularity of the footprint as a political and poetic hook: speaking in terms of our “ecological overshoot,” and the move from “ecological credit to ecological deficit”, the report urges an attendance to our “global footprint” which “now exceeds the world’s capacity to regenerate by about 30 per cent” (1). Angela Crombie’s A Lighter Footprint, an instruction manual for sustainable living, is one of a host of media through which individuals are educated in modes of footprint calculation and management. She presents a range of techniques, including carbon offsetting, shifting to sustainable modes of transport, eating and buying differently, recycling and conserving water, to mediate our carbon dioxide output, and to “show […] politicians how easy it is” (13). Governments however, need no persuading from citizens that carbon calculation is an exercise to be harnessed. As governments around the world move (slowly) to address climate change, policies that instrumentalise carbon dioxide emission and reduction via an auditing of credits and deficits have come to the fore—for example, the European Union Emissions Trading Scheme and the Chicago Climate Exchange. In Australia, we have the currently-under-debate Carbon Pollution Reduction Scheme, a part of which is the Australian Emissions Trading Scheme (AETS) that will introduce a system of “carbon credits” and trading in a market-based model of supply and demand. This initiative will put a price on carbon dioxide emissions, and cap the amount of emissions any one polluter can produce without purchasing further credits. In readiness for the scheme, business initiatives are forming to take advantage of this new carbon market. Industries in carbon auditing and off-setting services are consolidating; hectares of trees, already active in the carbon sequestration market, are being cultivated as “carbon sinks” and key sites of compliance for polluters under the AETS. Governments are also planning to turn their tracts of forested public land into carbon credits worth billions of dollars (Arup 7). The attachment of emission measures to goods and services requires a range of calculative experts, and the implementation of new marketing and branding strategies, aimed at conveying the carbon “health” of a product. The introduction of “food mile” labelling (the amount of carbon dioxide emitted in the transportation of the food from source to consumer) in certain supermarkets in the United Kingdom is an example of this. Carbon risk analysis and management programs are being introduced across businesses in readiness for the forthcoming “carbon economy”. As one flyer selling “a suite of carbon related services” explains, “early action will give you the edge in understanding and mitigating the risks, and puts you in a prime position to capitalise on the rewards” (MGI Business Solutions Worldwide). In addition, lobby groups are working to ensure exclusions from or the free allocation of permits within the proposed AETS, with degrees of compulsion applied to different industries – the Federal Government, for instance, will provide a $3.9 billion compensation package for the electric power sector when the AETS commences, to enable their “adjustment” to this carbon regime. Performing Life Noortje Mares provides a further means of thinking through the politics of life in the context of climate change by complicating the distinction between public and private interest. Her study of “green living experiments” describes the rise of carbon calculation in the home in recent years, and the implementation of technologies such as the smart electricity meter that provides a constantly updating display of data relating to amounts and cost of energy consumed and the carbon dioxide emitted in the routines of domestic life. Her research tracks the entry of these personal calculative regimes into public life via internet forums such as blogs, where individuals notate or discuss their experiences of pursing low-carbon lifestyles. On the one hand, these calculative practices of living and their public representation can be read as evidencing the pervasive neo-liberal governmentality at work in contemporary environmental practice, where individuals are encouraged to scrupulously monitor their domestic cultures. The rise of auditing as a technology of self, and more broadly as a technique of public accountability, has come under fire for its “immunity-granting role” (Charkiewicz 79), where internal audits become substituted for external compliance and regulation. Mares challenges this reading, however, by demonstrating the ways in which green living experiments “transform everyday material practices into practices of public involvement” that (118) don’t resolve or pin down relations between the individual, the non-human environment, and the social, or reveal a mappable flow of actions and effects between the public realm and the home. The empirical modes of publicity that these individuals employ, “the careful recording of measurements and the reliable descriptions of sensory observation, so as to enable ‘virtual witnessing’ by wider audiences”, open up to much more complex understandings than one of calculative self-discipline at work. As “instrument[s] of public involvement” (120), the experiments that Mares describe locate the politics of life in the embodied socio-material entanglements of the domestic sphere, in arrangements of humans and non-human technologies. Such arrangements, she suggests, are ontologically productive in that they introduce “not only new knowledge, but also new entities […] to society” (119), and as such these experiments and the modes of calculation they employ become active in the composition of reality. Recent work in economic sociology and cultural studies has similarly contended that calculation, far from either a naturalised or thoroughly abstract process, relies upon a host of devices, relations, and techniques: that is, as Gay Hawkins explains, calculative processes “have to be enacted” (108). Environmental governmentality in the service of securing life is a networked practice that draws in a host of actors, not a top-down imposition. The institution of carbon economies and carbon emissions as a new register of public accountability, brings alternative ways to calculate the world into being, and consequently re-calibrates life as it emerges from these heterogeneous arrangements. All That Gathers Latour writes that we come to know a matter of concern by all the things that gather around it (Latour). This includes the human, as well as the non-human actors, policies, practices and technologies that are put to work in the making of our realities. Climate change is routinely represented as a threat to life, with predicted (and occurring) species extinction, growing numbers of climate change refugees, dispossessed from uninhabitable lands, and the rise of diseases and extreme weather scenarios that put human life in peril. There is no doubt, of course, that climate change does mean death for some: indeed, there are thanopolitical overtones in inequitable relations between the fall-out of impacts from major polluting nations on poorer countries, or those much more susceptible to rising sea levels. Biosocial equity, as Bull points out, is a “matter of being equally alive and equally dead” (2). Yet in the biopolitical project of assuring living, life is burgeoning around the problem of climate change. The critique of neo-liberalism as a blanketing system that subjects all aspects of life to market logic, and in which the cynical techniques of industry seek to appropriate ethico-political stances for their own material ends, are insufficient responses to what is actually unfolding in the messy terrain of climate change and its biopolitics. What this paper has attempted to show is that there is no particular purchase on life that can be had by any one actor who gathers around this concern. Varying interests, ambitions, and intentions, without moral hierarchy, stake their claim in life as a constantly constituting site in which they participate, and from this perspective, the ways in which we understand life to be both produced and managed expand. This is to refuse either an opposition or a conflation between the market and nature, or the market and life. It is also to argue that we cannot essentialise human-ness in the climate change debate. For while human relations with animals, plants and weathers may make us what we are, so too do our relations with (in a much less romantic view) non-human things, technologies, schemes, and even markets—from carbon auditing services, to the label on a tin on the supermarket shelf. As these intersect and entangle, the project of life, in the new politics of climate change, is far from straightforward. References An Inconvenient Truth. Dir. Davis Guggenheim. Village Roadshow, 2006. Arup, Tom. “Victoria Makes Enormous Carbon Stocktake in Bid for Offset Billions.” The Age 24 Sep. 2009: 7. Bratich, Jack Z., Jeremy Packer, and Cameron McCarthy. “Governing the Present.” Foucault, Cultural Studies and Governmentality. Ed. Bratich, Packer and McCarthy. Albany: State University of New York Press, 2003. 3-21. Bull, Malcolm. “Globalization and Biopolitics.” New Left Review 45 (2007): 12 May 2009 . < http://newleftreview.org/?page=article&view=2675 >. Charkiewicz, Ewa. “Corporations, the UN and Neo-liberal Bio-politics.” Development 48.1 (2005): 75-83. Clark, Nigel, and Nick Stevenson. “Care in a Time of Catastrophe: Citizenship, Community and the Ecological Imagination.” Journal of Human Rights 2.2 (2003): 235-246. Crombie, Angela. A Lighter Footprint: A Practical Guide to Minimising Your Impact on the Planet. Carlton North, Vic.: Scribe, 2007. Di Muzio, Tim. “Governing Global Slums: The Biopolitics of Target 11.” Global Governance. 14.3 (2008): 305-326. Elden, Stuart. “Governmentality, Calculation and Territory.” Environment and Planning D: Society and Space 25 (2007): 562-580. Hawkins, Gay. The Ethics of Waste: How We Relate to Rubbish. Sydney: University of New South Wales Press, 2006. Latour, Bruno. “Why Has Critique Run Out of Steam?: From Matters of Fact to Matters of Concern.” Critical Inquiry 30.2 (2004): 225-248. Mares, Noortje. “Testing Powers of Engagement: Green Living Experiments, the Ontological Turn and the Undoability and Involvement.” European Journal of Social Theory 12.1 (2009): 117-133. MGI Business Solutions Worldwide. “Carbon News.” Adelaide. 2 Aug. 2009. Ong, Aihwa. “Mutations in Citizenship.” Theory, Culture and Society 23.2-3 (2006): 499-505. Potter, Emily. “Footprints in the Mallee: Climate Change, Sustaining Communities, and the Nature of Place.” Landscapes and Learning: Place Studies in a Global World. Ed. Margaret Somerville, Kerith Power and Phoenix de Carteret. Sense Publishers. Forthcoming. Rabinow, Paul, and Nikolas Rose. “Biopower Today.” Biosocieties 1 (2006): 195-217. Rose, Nikolas. “The Politics of Life Itself.” Theory, Culture and Society 18.6 (2001): 1-30. World Wildlife Fund. Living Planet Report 2008. Switzerland, 2008.

Introduction Ever-enduring advancements in science and technology promise to offer solutions to problems or simply to make life a bit easier. However, not every advancement has only positive effects, but can also have undesired, negative ramifications. This article will take a closer look at Deus Ex: Human Revolution (DXHR), a dystopian video game which promises to put players in the position of deciding whether the science of human enhancement is a way to try to play God, or whether it enables us “to become the Gods we’ve always been striving to be” (Eidos Montreal, “Deus Ex: Human Revolution”). In this article I will argue that DXHR creates a space in which players can virtually witness future technologies for human performance enhancement without the need to alter their own bodies. DXHR is special particularly in two respects: first, the developers have achieved a high credibility and scientific realism of the enhancement technologies depicted in the game which can be described as being “diegetic prototypes” (Kirby, “The Future Is Now ” 43); second, the game directly invites players to reflect upon the impact and morality of human enhancement. It does so through a story in line with the cyberpunk genre, which envisions not only the potential benefits of an emergent technology, but has an even stronger focus on the negative contingencies. The game and its developers foresee a near-future society that is split into two fractions due to human enhancement technologies which come in the form of neuro-implants and mechanical prosthetics; and they foresee a near-future setting in which people are socially and economically forced to undergo enhancement surgery in order to keep up with the augmented competition. DXHR is set in the year 2027 and the player takes control of Adam Jensen, an ex-SWAT police officer who is now the chief of security of Sarif Industries, one of the world's leading biotechnology companies that produce enhancement technologies. Augmented terrorists attack Sarif Industries, abduct the head scientists, and nearly kill Jensen. Jensen merely survives because his boss puts him through enhancement surgery, which replaces many parts of his body with mechanical augmentations. In the course of the game it becomes clear that Jensen has been augmented beyond any life-saving necessity that grants him superhuman abilities and allows him to find and defeat the terrorists, but the augmentations also challenge his humanity. Is Jensen a human, a cyborg, or has he become more machine than man? DXHR grants players the illusion of immersion into a virtual world in which augmentations exist as a matter of fact and in which a certain level of control can be practiced. Players take up the role of a character distinctly more powerful and capable than the person in control, exceeding the limits of human abilities. The superior abilities are a result of scientific and technological advancements implying that every man or woman is able to attain the same abilities by simply acquiring augmentations. Thus, with the help of the playable character, Adam Jensen, the game lets players experience augmentations without any irreparable damages done to their bodies, but the experience will leave a lasting impression on players regarding the science of human enhancement. The experience with augmentations happens through and benefits from the effect of “virtual witnessing”: The technology of virtual witnessing involves the production in a reader’s mind of such an image of an experimental scene as obviates the necessity for either direct witness or replication. Through virtual witnessing the multiplication of witnesses could be, in principle, unlimited. (Shapin and Schaffer 60) In other words, simply by reading about and/or seeing scientific advancements, audiences can witness them without having to be present at the site of creation. The video game, hereby, is itself the medium of virtual witnessing whereby audiences can experience scientific advancements. Nevertheless, the video game is not just about reading or seeing potential future enhancement technologies, but permits players to virtually test-drive augmentations—to actually try out three-dimensionally rendered prototypes on a virtual body. In order to justify this thesis, a couple of things need to be clarified that explain in which ways the virtual witnessing of fictional enhancements in DXHR is a valid claim. Getting into the Game First I want to briefly describe how I investigated the stated issue. I have undertaken an auto-ethnography (Ellis, Adams, and Bochner) of DXHR, which concretely means that I have analytically played DXHR in an explorative fashion (Aarseth) trying to discover as many elements on human enhancement that the game has to offer. This method requires not only close observation of the virtual environment and documentation through field notes and screenshots, but also self-reflection of the actions that I chose to take and that were offered to me in the course of the game. An essential part of analytically playing a game is to be aware that the material requires “the activity of an actual player in order to be accessible for scrutiny” (Iversen), and that the player’s input fundamentally shapes the gaming experience (Juul 42). The meaning of the game is contingent upon the contribution of the player, especially in times in which digital games grant players more and more freedom in terms of narrative construction. In contrast to traditional narrative, the game poses an active challenge to the player which entails the need to become better in relation to the game’s mechanics and hence “studying games … implies interacting with the game rules and exploring the possibilities created by these rules, in addition to studying the graphical codes or the narration that unfolds” (Malliet). It is important to highlight that, although the visual representation of human enhancement technologies has an enormous potential impact on the player’s experience, it is not the only crucial element. Next to the representational shell, the core of the game, i.e. “how game rules and interactions with game objects and other players are structured” (Mäyrä 165), shapes the virtual witnessing of the augmentations in just an important way. Finally, the empirical material that was collected was analyzed and interpreted with the help of close-reading (Bizzocchi and Tanenbaum 395). In addition to the game itself, I have enriched my empirical material with interviews of developers of the game that are partly freely available on the Internet, and with the promotional material such as the trailers and a website (Eidos Montreal, “Sarif Industries”) that was released prior to the game. Sociotechnical Imaginaries In this case study of DXHR I have not only investigated how augmented bodies and enhancement technologies are represented in this specific video game, but also attempted to uncover which “sociotechnical imaginaries” (Jasanoff and Kim) underlie the game and support the virtual witnessing experience. Sociotechnical imaginaries are defined as “collectively imagined forms of social life and social order reflected in the design and fulfillment of nation-specific scientific and/or technological projects” (Jasanoff and Kim 120). The concept appeared to be suitable for this study as it covers and includes “promises, visions and expectations of future possibilities” (Jasanoff and Kim 122) of a technology as well as “implicit understandings of what is good or desirable in the social world writ large” (Jasanoff and Kim 122–23). The game draws upon several imaginaries of human enhancement. For example, the most basic imaginary in the game is that advanced engineered prosthetics and implants will be able to not only remedy dysfunctional parts of the human body, but will be able to upgrade these. Apart from this idea, the two prevailing sociotechnical imaginaries that forward the narrative can be subsumed as the transhumanist and the purist imaginary. The latter views human enhancement, with the help of science and technology, as unnatural and as a threat to humanity particularly through the power that it grants to individuals, while the former transports the opposing view. Transhumanism is: the intellectual and cultural movement that affirms the possibility and desirability of fundamentally improving the human condition through applied reason, especially by developing and making widely available technologies to eliminate aging and to greatly enhance human intellectual, physical, and psychological capacities. (Chrislenko et al.) The transhumanist imaginary in the game views technological development of the body as another step in the human evolution, not as something abhorrent to nature, but a fundamental human quality. Similar ideas can be found in the writings of Sigmund Freud and Arnold Gehlen, who both view the human being’s need to improve as part of its culture. Gehlen described the human as a “Mängelwesen”—a ‘deficient’ creature—who is, in contrast to other species, not specialized to a specific environment, but has the ability to adapt to nearly every situation because of this deficiency (Menne, Trutwin, and Türk). Freud even denoted the human as a “Prothesengott”—a god of prostheses: By means of all his tools, man makes his own organs more perfect—both the motor and the sensory—or else removes the obstacles in the way of their activity. Machinery places gigantic power at his disposal which, like his muscles, he can employ in any direction; ships and aircraft have the effect that neither air nor water can prevent his traversing them. With spectacles he corrects the defects of the lens in his own eyes; with telescopes he looks at far distances; with the microscope he overcomes the limitations in visibility due to the structure of his retina. (Freud 15) Returning to DXHR, how do the sociotechnical imaginaries matter for the player? Primarily, the imaginaries cannot be avoided as they pervade nearly every element in the game, from the main story that hinges upon human enhancement over the many optional side missions, to contextual elements such as a conference on “the next steps in human evolution” (Eidos Montreal, “Deus Ex: Human Revolution”). Most importantly, it impacts the player’s view in a crucial way. Human enhancement technologies are presented as controversial, neither exclusively good nor bad, which require reflection and perhaps even legal regulation. In this way, DXHR can be seen as offering the player a restricted building set of sociotechnical imaginaries of human enhancement, whereby the protagonist, Adam Jensen, becomes the player’s vessel to construct one’s own individual imaginary. In the end the player is forced to choose one of four outcomes to complete the game, and this choice can be quite difficult to make. Anticipation of the Future It is not unusual for video games to feature futuristic technologies that do not exist in the real world, but what makes DXHR distinct from others is that the developers have included an extent of information that goes beyond any game playing necessity (see Figures 1 & 2). Moreover, the information is not fictional but the developers have taken strategic steps to make it credible. Mary DeMarle, the narrative designer, explained at the San Diego Comic-Con in 2011, that a timeline of augmentation was created during the production phase in which the present state of technology was extrapolated into the future. In small incremental steps the developers have anticipated which enhancement technologies might be potentially feasible by the year 2027. Their efforts were supported by the science consultant, Will Rosellini, who voluntarily approached the development team to help. Being a neuroscientist, he could not have been a more fitting candidate for the job as he is actively working and researching in the biotechnology sector. He has co-founded two companies, MicroTransponder Inc., which produces tiny implantable wireless devices to interface with the nervous system to remedy diseases (see Rosellini’s presentation at the 2011 Comic-Con) and Rosellini Scientific, which funds, researches and develops advanced technological healthcare solutions (Rosellini; Rosellini Scientific). Due to the timeline which has been embedded explicitly and implicitly, no augmentation appears as a disembodied technology without history in the game. For example, although the protagonist wears top-notch military arm prostheses that appear very human-like, this prosthesis is depicted as one of the latest iterations and many non-playable characters possess arm prostheses that appear a lot older, cruder and more industrial than those of Jensen. Furthermore, an extensive description employing scientific jargon for each of the augmentations can be read on the augmentation overview screen, which includes details about the material composition and bodily locations of the augmentations. Figure 1: More Info Section of the Cybernetic Arm Prosthesis as it appears in-game (all screenshots taken with permission from Deus Ex: Human Revolution (2011), courtesy of Eidos Montreal) More details are provided through eBooks, which are presented in the form of scientific articles or conference proceedings, for which the explorative gamer is also rewarded with valuable experience points upon finding which are used to activate and upgrade augmentations. The eBooks also reflect the timeline as each eBook is equipped with a year of publication between 2001 and 2022. Despite the fact that these articles have been supposedly written by a fictional character, the information is authentic and taken from actual scientific research papers, whereby some of these articles even include a proper scientific citation. Figure 2: Example of a Darrow eBook The fact that a scientist was involved in the production of the game allows classifying the augmentations as “diegetic prototypes” which are “cinematic depictions of future technologies … that demonstrate to large public audiences a technology’s need, benevolence and viability” (“The Future Is Now” 43). Diegetic prototypes are fictional, on-screen depictions of technologies that do not exist in that form in real life and have been created with the help of a science consultant. They have been placed in movies to allay anxieties and doubts and perhaps to even provoke a longing in audiences to see depicted technologies become reality (Kirby, “The Future Is Now” 43). Of course the aesthetic appearance of the prototypes has an impact on audiences’s desire, and particularly the artificial arms of Jensen that have been designed in an alluring fashion as can be seen in the following figure: Figure 3: Adam Jensen and arm prosthesis An important fact about diegetic prototypes—and about prototypes (see Suchman, Trigg, and Blomberg) in general—is that they are put to specific use and are embedded and presented in an identifiable social context. Technological objects in cinema are at once both completely artificial—all aspects of their depiction are controlled—and normalized as practical objects. Characters treat these technologies as a ‘natural’ part of their landscape and interact with these prototypes as if they are everyday parts of their world. … fictional characters are ‘socializing’ technological artifacts by creating meanings for the audience, ‘which is tantamount to making the artifacts socially relevant’. (Kirby, “Lab Coats” 196) The power of DXHR is that the diegetic prototypes—the augmentations—are not only based on real world scientific developments and contextualized in a virtual social space, but that the player has the opportunity to handle the augmentations. Virtual Testing Virtual witnessing of the not-yet-existent augmentations is supported by scientific descriptions, articles, and the appearance of the technologies in DXHR, but the moral and ethical engagement is established by the player’s ability to actively use the augmentations and by the provision of choice how to use them. As mentioned, most of the augmentations are inactive and must first be activated by accumulating and spending experience points on them. This requires the player to make reflections on the potential usage and how a particular augmentation will lead to the successful completion of a mission. This means that the player has to constantly decide how s/he wants to play the game. Do I want to be able to hack terminals and computers or do I rather prefer getting mission-critical information by confronting people in conversation? Do I want to search for routes where I can avoid enemy detection or do I rather prefer taking the direct route through the enemy lines with heavy guns in hands? This recurring reflection of which augmentation to choose and their continuous usage throughout the game causes the selected augmentations to become valuable and precious to the player because they transform from augmentations into frequently used tools that facilitate challenge and reduce difficulty of certain situations. In addition, the developers have ensured that no matter which approach is taken, it will always lead to success. This way the role-playing elements of the game are accentuated and each player will construct their own version of Jensen. However, it may be argued that DXHR goes beyond mere character building. There is a breadth of information and opinions on human enhancement offered, but also choices that are made invite players to reflect upon the topic of human enhancement. Among the most conspicuous instances in the game, that involve the player’s choice, are the conversations with other non-playable characters. These are events in the game which require the player to choose one out of three responses for Jensen, and hence, these determine to some extent Jensen’s attitude towards human enhancement. Thus, in the course of the game players might discover their own conviction and might compose their own imaginary of human enhancement. Conclusion This article has explored that DXHR enables players to experience augmentations without being modified themselves. The game is filled with various sociotechnical imaginaries of prosthetic and neurological human enhancement technologies. The relevance of these imaginaries is increased by a high degree of credibility as a science consultant has ensured that the fictional augmentations are founded upon real world scientific advancements. The main story, and much of the virtual world, hinge upon the existence and controversy of these sorts of technologies. Finally, the medium ‘videogame’ allows taking control of an individual, who is heavily augmented with diegetic prototypes of future enhancement technologies, and it also allows using and testing the increased abilities in various situations and challenges. All these elements combined enable players to virtually witness not-yet-existent, future augmentations safely in the present without the need to undertake any alterations of their own bodies. This, in addition to the fact that the technologies are depicted in an appealing fashion, may create a desire in players to see these augmentations become reality. 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