Claims about the transformations enabled by modern science and medicine have been accompanied by an unsettling question in recent years: might the knowledge being produced undermine--rather than further--human and animal well being? On the Dual Uses of Science and Ethics examines the potential for the skills, know-how, information, and techniques associated with modern biology to serve contrasting ends. In recognition of the moral ambiguity of science and technology, each chapter considers steps that might be undertaken to prevent the deliberate spread (...) of disease. Central to achieving this aim is the consideration of what role ethics might serve. To date, the ethical analysis of the themes of this volume has been limited. This book remedies this situation by bringing together contributors from a broad range of backgrounds to address a highly important ethical issue confronting humanity during the 21st century. (shrink)

This seminal collection on the ethical issues associated with infectious disease is the first book to correct bioethics’ glaring neglect of this subject. Timely in view of public concern about SARS, AIDS, avian flu, bioterrorism and antibiotic resistance. Brings together new and classic papers by prominent figures. Tackles the ethical issues associated with issues such as quarantine, vaccination policy, pandemic planning, biodefense, wildlife disease and health care in developing countries.

Though the reputation of eugenics has been tarnished by history, eugenics per se is not necessarily a bad thing. Many advocate a liberal new eugenics—where individuals are free to choose whether or not to employ genetic technologies for reproductive purposes. Though genetic interventions aimed at the prevention of severe genetic disorders may be morally and socially acceptable, reproductive liberty in the context of enhancement may conflict with equality. Enhancement could also have adverse effects on utility. The enhancement debate requires a (...) shift in focus. What the equality and/or utility costs of enhancement will be is an empirical question. Rather than philosophical speculation, more social science research is needed to address it. Philosophers, meanwhile, should address head-on the question of how to strike a balance between liberty, equality, and utility in cases of conflict (in the context of genetics). (shrink)

Gain-of-function research involves experimentation that aims or is expected to increase the transmissibility and/or virulence of pathogens. Such research, when conducted by responsible scientists, usually aims to improve understanding of disease causing agents, their interaction with human hosts, and/or their potential to cause pandemics. The ultimate objective of such research is to better inform public health and preparedness efforts and/or development of medical countermeasures. Despite these important potential benefits, GOF research can pose risks regarding biosecurity and biosafety. In 2014 the (...) administration of US President Barack Obama called for a “pause” on funding of GOF experiments involving influenza, SARS, and MERS viruses in particular. With announcement of this pause, the US Government launched a “deliberative process” regarding risks and benefits of GOFR to inform future funding decisions—and the US National Science Advisory Board for Biosecurity was tasked with making recommendations to the US Government on this matter. As part of this deliberative process the National Institutes of Health commissioned this Ethical Analysis White Paper, requesting that it provide review and summary of ethical literature on GOFR, identification and analysis of existing ethical and decision-making frameworks relevant to the evaluation of risks and benefits of GOFR, decision-making about the conduct of GOF studies, and the development of US policy regarding GOFR, and development of an ethical and decision-making framework that may be considered by NSABB when analyzing information provided by GOFR risk-benefit assessment, and when crafting its final recommendations. The ethical and decision-making framework ultimately developed is based on the idea that there are numerous ethically relevant dimensions upon which any given case of GOFR can fare better or worse : research imperative, proportionality, minimization of risks, manageability of risks, justice, good governance, evidence, and international outlook and engagement. Rather than drawing a sharp bright line between GOFR studies that are ethically acceptable and those that are ethically unacceptable, this framework is designed to indicate where any given study would fall on an ethical spectrum—where imaginable cases of GOFR might range from those that are most ethically acceptable, at one end of the spectrum, to those that are most ethically problematic or unacceptable, at the other. The aim should be that any GOFR pursued should be as far as possible towards the former end of the spectrum. (shrink)

Centre for Applied Philosophy and Public Ethics, The Australian National University, LPO Box 8260, ANU, Canberra ACT 2601, Australia. Email: michael.selgelid{at}anu.edu.au ' + u + '@ ' + d + ' '/ /- ->. Home page: http: //www.cappe.edu.au/staff/michael-selgelid.htmThis article advocates the development of a moderate pluralist theory of political philosophy that recognizes that utility, liberty and equality are legitimate, independent social values and that none should have absolute priority over the others. Inter alia, such a theory (...) would provide a principled means for striking a balance, or making trade-offs, between these values in cases of conflict. Recent developments in public health ethics have made progress in thinking about how to make trade-offs between liberty and utility in particular. While public health ethicists often claim that the least restrictive alternative should be used to achieve the public health goal in question, I argue that a plausible but under-recognized idea is that the least restrictive alternative might sometimes involve improvement of global health via redistributive taxation—i.e., rather than coercive social distancing measures. I conclude by demonstrating that the proportionality principle leaves open the question of when exactly utility outweighs liberty or vice versa—and I argue that, rather than speaking about the morality of liberty-infringing public health interventions in categorical/binary terms, it would be more fruitful and realistic to think and speak about the degree to which a liberty-infringing public health intervention is morally appropriate. CiteULike Connotea Del.icio.us What's this? (shrink)

CAPPE LPO Box 8260 ANU Canberra ACT 2601 Australia Tel: +61 (0)2 6125 4355, Fax: +61 (0)2 6125 6579; Email: michael.selgelid{at}anu.edu.au ' + u + '@' + d + ' '//--> Abstract This article reviews ethically relevant history of tuberculosis and recent developments regarding extensively drug resistant tuberculosis (XDR-TB). It argues that tuberculosis is one of the most important neglected topics in bioethics. With an emphasis on XDR-TB, it examines a range of the more challenging ethical issues associated (...) with tuberculosis: individual obligations to avoid infecting others, coercive social distancing measures, third-party notification, health workers' duty to treat contagious patients, and international justice. In each of these cases, key philosophical questions are highlighted and the need for empirical research/information is demonstrated. CiteULike Connotea Del.icio.us What's this? (shrink)

ABSTRACT This paper reviews the dynamics behind, and ethical issues associated with, the phenomenon of drug resistance. Drug resistance is an important ethical issue partly because of the severe consequences likely to result from the increase in drug resistant pathogens if more is not done to control them. Drug resistance is also an ethical issue because, rather than being a mere quirk of nature, the problem is largely a product of drug distribution. Drug resistance results from the over‐consumption of antibiotics (...) by the wealthy; and it, ironically, results from the under‐consumption of antibiotics, usually by the poor or otherwise marginalized. In both kinds of cases the phenomenon of drug resistance illustrates why health (care) – at least in the context of infectious disease – should be treated as a (global) public good. The point is that drug resistance involves ‘externalities’ affecting third parties. When one patient develops a resistant strain of disease because of her over‐ or under‐consumption of medication, this more dangerous malady poses increased risk to others. The propriety of free‐market distribution of goods subject to externalities is famously dubious – given that the ‘efficiency’ rationale behind markets assumes an absence of externalities. Market failure in the context of drug resistance is partly revealed by the fact that no new classes of antibiotics have been developed since 1970. I conclude by arguing that the case of drug resistance reveals additional reasons – to those traditionally appealed to by bioethicists – for treating health care as something special when making policy decisions about its distribution. (shrink)

The American Medical Association's Council on Ethical and Judicial Affairs' new “Guidelines to Prevent the Malevolent Use of Biomedical Research” are both timely and appropriate. These guidelines are a product of the increasing realization of the “dual use” potential of life science discoveries. Although biomedical research usually aims at the development of new medicines, vaccines, diagnostics, and so on, the very same discoveries that could benefit humankind in these ways also often have implications for the development of biological weapons. The (...) CEJA Guidelines draw attention to this fact and hold that physician–researchers have responsibilities regarding the uses to which their discoveries are put. Medical researchers should assess the likely social benefits and harms of their work and avoid projects where the latter outweigh the former. Knowledge and the advancement of science should not be the only aims of scientists; “commitment to public welfare and safety” are also essential. Toward the aim of preventing the malevolent use of research discoveries, the CEJA states that “regulatory oversight” of research, increased ethics education of physician researchers, and sometimes perhaps even censorship of research findings, are warranted. (shrink)

The influential public health ethics framework proposed by Childress et al. includes five “justificatory conditions,” two of which are “necessity” and “least infringement.” While the framework points to important moral values, we argue it is redundant for it to list both necessity and least infringement because they are logically equivalent. However, it is ambiguous whether Childress et al. would endorse this view, or hold the two conditions distinct. This ambiguity has resulted in confusion in public health ethics discussions citing the (...) Childress et al. framework, as demonstrated by debate between Resnik and Wilson and Dawson. We analyse this debate to resolve these ambiguities. Finally, we argue that the necessity/least infringement principle of the Childress et al. framework applies only in cases in which only one intervention is to be implemented to achieve one specific goal. In other cases, it is not essential to require that only the least infringing intervention be implemented. (shrink)

This issue of Journal of Medical Ethics includes a pair of papers debating the implications of moral bioenhancement for human freedom–and, especially, the question of whether moral enhancement should potentially be compulsory. In earlier writings Ingmar Persson and Julian Savulescu argue that compulsory moral bioenhancement may be necessary to prevent against catastrophic harms that might result from immoral behaviour.1 In “Voluntary moral enhancement and the survival-at-any-cost bias” Vojin Rakic agrees with P&S that moral bioenhancement is important, but he argues that (...) bioenhancement interventions should be voluntary rather than compulsory .Both Rakic and P&S disagree with Harris, who denies that moral enhancement could involve interventions beyond cognitive enhancement. Moral enhancement would essentially involve cognitive enhancement, according to Harris, because moral behaviour requires ability to distinguish right from wrong–ie, awareness and rational capacity.2 While Harris admits that those who know what is right might not always do what is right, he argues that we could not altogether prevent people from doing what is wrong without destroying freedom essential to their moral agency.According to Rakic, however, the fact that people who know what is right might not always do what is right reveals that mere cognitive enhancement would be inadequate to prevent immoral behavior–because much immoral behaviour results from weakness of will. Because people could freely chose to undergo moral enhancement, furthermore, according to Rakic, “our freedom will not be curtailed by it”. Presumably Rakic here supposes that if a person freely choses to be in State A then State A is necessarily compatible with–and a reflection of–her human freedom. Forcing a person to be in State A, on the other hand, …. (shrink)

In debates over the regulation of communication related to dual-use research, the risks that such communication creates must be weighed against against the value of scientific autonomy. The censorship of such communication seems justifiable in certain cases, given the potentially catastrophic applications of some dual-use research. This conclusion however, gives rise to another kind of danger: that regulators will use overly simplistic cost-benefit analysis to rationalize excessive regulation of scientific research. In response to this, we show how institutional design principles (...) and normative frameworks from free speech theory can be used to help extend the argument for regulating dangerous dual-use research beyond overly simplistic cost-benefit reasoning, but without reverting to an implausibly absolutist view of scientific autonomy. (shrink)

Centre for Applied Philosophy and Public Ethics (CAPPE), Menzies Centre for Health Policy, The Australian National University, LPO Box 8260, ANU Canberra ACT 2601, Australia. Tel.: +61 (0)2 6125 4355; Mobile: +61 (0)431 124 286; Fax: +61 (0)2 6125 6579; Email: michael.selgelid{at}anu.edu.au ' + u + '@' + d + ' '//--> Abstract Thomas Pogge has proposed a supplement to the standard patent regime whereby innovating companies would be rewarded in proportion to the extent to which their innovations (...) lead to reduction of the global burden of disease (GBD). This paper argues that an expansion of this proposal—whereby provision of already existing medicines are incentivised in a similar way—would provide a more comprehensive solution to the healthcare situation in developing countries. It then considers the practical challenges that the implementation of such a proposal (expanded or otherwise) would entail. Though these include difficulties associated with disease burden metric, I argue that the most serious difficulties are associated with the problem of causal attribution. A basic idea underlying Pogge's proposal is that the disease burden reduction attributable to particular interventions can be determined. Theoretically speaking, in cases involving multiple interacting causal factors, there may be no fact of the matter regarding the extent to which disease burden reduction should be attributed to one intervention as opposed to another; and (even if workable practical solutions to this theoretical challenge can be met) the data requirements for implementation would be daunting. CiteULike Connotea Del.icio.us What's this? (shrink)

The qualitative research of Baum and colleagues (2009), among other things, reveals that people are worried about the financial consequences of social-distancing measures and that lack of trust in...

The dual-use dilemma arises in the context of research in the biological and other sciences as a consequence of the fact that one and the same piece of scientific research sometimes has the potential to be used for bad as well as good purposes. It is an ethical dilemma since it is about promoting good in the context of the potential for also causing harm, e.g., the promotion of health in the context of providing the wherewithal for the killing of (...) innocents. It is an ethical dilemma for the researcher because of the potential actions of others, e.g., malevolent non-researchers who might steal dangerous biological agents, or make use of the original researcher’s work. And it is a dilemma for governments concerned with the security of their citizens, as well as their health. In this article we construct a taxonomy of types of “experiments of concern” in the biological sciences, and thereby map the terrain of ethical risk. We then provide a series of analyses of the ethical problems and considerations at issue in the dual-use dilemma, including the impermissibility of certain kinds of research and possible restrictions on dissemination of research results given the risks to health and security. Finally, we explore the main available institutional responses to some of the specific ethical problems posed by the dual-use dilemma in the biological sciences. (shrink)

This paper examines cumulative ethical and self-interested reasons why wealthy developed nations should be motivated to do more to improve health care in developing countries. Egalitarian and human rights reasons why wealthy nations should do more to improve global health are that doing so would (1) promote equality of opportunity, (2) improve the situation of the worst-off, (3) promote respect of the human right to have one's most basic needs met, and (4) reduce undeserved inequalities in well-being. Utilitarian reasons for (...) improving global health are that this would (5) promote the greater good of humankind, and (6) achieve enormous benefits while requiring only small sacrifices. Libertarian reasons are that this would (7) amend historical injustices and (8) meet the obligation to amend injustices that developed world countries have contributed to. Self-interested reasons why wealthy nations should do more to improve global health are that doing so would (9) reduce the threat of infectious diseases to developed countries, (10) promote developed countries' economic interests, and (11) promote global security. All of these reasons count, and together they add up to make an overwhelmingly powerful case for change. Those opposed to wealthy government funding of developing world health improvement would most likely appeal, implicitly or explicitly, to the idea that coercive taxation for redistributive purposes would violate the right of an individual to keep his hard-earned income. The idea that this reason not to improve global health should outweigh the combination of rights and values embodied in the eleven reasons enumerated above, however, is implausibly extreme, morally repugnant and perhaps imprudent. (shrink)

AIDS in the Twenty‐First Century: Disease and Globalization, by Tony Barnett and Alan Whiteside. New York: Palgrave Macmillan. 2002. 416 pp. US$19.95 The Moral Economy of AIDS in South Africa, by Nicoli Nattrass. Cambridge, UK: Cambridge University Press. 2004. 222 pp. US$30.00.

The proliferation of prenatal genetic testing likely to follow from advances in genetic science invites reconsideration of the moral status of abortion. In this article I examine arguments surrounding the moral status of the fetus. I conclude that secular philosophy should ultimately admit that the moral status of the fetus is uncertain, and that this uncertainty itself makes abortion morally problematic. While this does not imply that abortion is always morally wrong or that it should be legally prohibited, it does (...) recommend a presumption in favor of preserving fetal life except in special circumstances. A relevant worry is that the rise of eugenic abortion gives new force to slippery slope arguments that we will be led down a path to a situation where more fetuses are terminated for relatively trivial reasons and that this will promote other bad social consequences. This might justify legislative discouragement of certain genetic interventions. (shrink)

This article reviews the history of smallpox and ethical issues that arise with its threat as a biological weapon. Smallpox killed more people than any infectious disease in history-and perhaps three times more people in the 20th Century than were killed by all the wars of that period. Following a WHO-sponsored global vaccination campaign, smallpox was officially declared eradicated in 1980. It has since been revealed that the Soviet Union, until its fall in the early 1990s, manufactured tens of tons (...) of smallpox for military purposes. A worry is that some of this may have fallen into the hands of "rogue" nations or terrorists. Current U.S. debate questions whether smallpox vaccine should therefore be made available to the American public, which-like the rest of the world-now lacks immunity. Because the vaccine is considerably dangerous, public dialogue cannot resolve this matter if evidence material to the likelihood of attack is classified (i.e. secret). I conclude by recommending numerous future areas for ethics research related to the weaponization of smallpox. (shrink)

Because a newborn baby does not have sufficiently complex psychological capacities to have a concept of continuation of life, according to Tooley, it cannot desire continuation of life, and thus cannot have a right to it.1 A similar position has been advocated by Kuhse and Singer2 ,3—and, more recently, by Giubilini and Minerva.4Key assumptions of Tooley are that being able to desire something is a necessary condition of having a right to it and having a concept of something is a (...) necessary condition of being able to desire it. Despite their plausibility, these premises are at least open to question—that is, these are things that there can presumably be reasonable disagreement about. I …. (shrink)

ABSTRACT While UNESCO's Universal Draft Declaration on Bioethics and Human Rights highlights appropriate ethical values, its principles are stated in absolute terms and conflict with one another. The Draft Declaration fails to sufficiently address the possibility of conflict between principles, and it provides no real guidance on how to strike a balance between them in cases where conflict occurs. The document's inadequate treatment of conflicting values is revealed by examination of cases where principles aimed at the promotion of autonomy and (...) liberty conflict with those aimed at benefit maximization and harm minimization. I argue that liberty (and autonomy) may be less important in the context of health care than in other contexts, and I conclude by suggesting specific ways in which some of UNESCO's principles should be revised in order to better address the reality of conflicting values. (shrink)

Many are worried that the Human Genome Project will lead to a revival of eugenics. In this essay I examine the troublesome history of the ‘old eugenics’ which included the Nazi program of ‘Racial Hygiene’ and the sterilization of the ‘feebleminded’ in the United States of America. A ‘new eugenics’, involving prenatal diagnosis and the selective abortion of fetuses likely to develop into severely disabled infants, on the other hand, is claimed by many to be morally acceptable. If this is (...) correct, then eugenics per se might not necessarily be an altogether bad thing. I therefore examine what was wrong with the old eugenics and what is often claimed to be different and better about the new eugenics. I argue that the morally relevant differences between the bad old eugenics and a potentially acceptable new eugenics are not accurately captured by a family of contrasts often thought to distinguish the two. I conclude that, in any case, the worry that the Human Genome Project will lead to a revival of eugenics is a red herring. The important thing is to realize that emerging genetic science and technology confronts both individuals and society as a whole with new kinds of reproductive decisions worthy of careful consideration. (shrink)

In this article, we raise ethical concerns about the potential misuse of open-source biology : biological research and development that progresses through an organisational model of radical openness, deskilling, and innovation. We compare this organisational structure to that of the open-source software model, and detail salient ethical implications of this model. We demonstrate that OSB, in virtue of its commitment to openness, may be resistant to governance attempts.

A common strategy in bioethics is to posit a prima facie case in favour of one policy, and to then claim that the burden of proof falls on those with opposing views. If the burden of proof is not met, it is claimed, then the policy in question should be accepted. This article illustrates, and critically evaluates, examples of this strategy in debates about the sale of organs by living donors, human enhancement, and the precautionary principle. We highlight general problems (...) with this style of argument, and particular problems with its use in specific cases. We conclude that the burden ultimately falls on decision-makers to choose the policy supported by the best reasons. (shrink)

Tuberculosis (TB) is theTuberculosis (TB) second leading infectious cause of mortality worldwide and arguably the most important neglected topic in bioethics. This chapter: (1) explains the ethical importance of TB, (2) documents its neglect in bioethics discourse, (3) maps the terrain of ethical issues associated with TBTuberculosis (TB), and (4) advocates a moderate pluralistic approach to ethical issues associated with TB.

Controlled human infection challenge studies (CHIs) involve intentionally exposing research participants to, and/or thereby infecting them with, micro‐organisms. There have been increased calls for more CHIs to be conducted in low‐ and middle‐income countries (LMICs) where many relevant diseases are endemic. This article is based on a research project that identified and analyzed ethical and regulatory issues related to endemic LMIC CHIs via (a) a review of relevant literature and (b) qualitative interviews involving 45 scientists and ethicists with relevant expertise. (...) In this article we argue that though there is an especially strong case for conducting CHIs in endemic (LMIC) settings, certain ethical issues related to the design and conduct of such studies (in such settings) nonetheless warrant particularly careful attention. We focus on ethical implications of endemic LMIC CHIs regarding (a) potential direct benefits for participants, (b) risks to participants, (c) third‐party risks, (d) informed consent, (e) payment of participants, and (f) community engagement. We conclude that there is a strong ethical rationale to conduct (well‐designed) CHIs in endemic LMICs, that certain ethical issues warrant particularly careful consideration, and that ethical analyses of endemic LMIC CHIs can inform current debates in research ethics more broadly. (shrink)

Human infection challenge studies (HCS) involve intentionally infecting research participants with pathogens (or other micro-organisms). There have been recent calls for more HCS to be conducted in low-income and middle-income countries (LMICs), where many relevant diseases are endemic. HCS in general, and HCS in LMICs in particular, raise numerous ethical issues. This paper summarises the findings of a project that explored ethical and regulatory issues related to LMIC HCS via (i) a review of relevant literature and (ii) 45 qualitative interviews (...) with scientists and ethicists. Among other areas of consensus, we found that there was widespread agreement that LMIC HCS can be ethically acceptable, provided that they have a sound scientific rationale, are accepted by local communities and meet usual research ethics requirements. Unresolved issues include those related to (i) acceptable approaches to trade-offs between the scientific aim to produce generalisable results and the protection of participants, (iii) the sharing of benefits with LMIC populations, (iii) the acceptable limits to risks and burdens for participants, (iv) the potential for third-party risk and whether the degree of acceptable third-party risk is different in endemic settings, (v) the conditions under which (if any) it would be appropriate to recruit children for disease-causing HCS, (v) appropriate levels of payment to participants and (vi) appropriate governance of (LMIC) HCS. This paper provides preliminary analyses of these ethical considerations in order to (i) inform scientists and policymakers involved in the planning, conduct and/or governance of LMIC HCS and (ii) highlight areas warranting future research. Insofar as this article focuses on HCS in (endemic) settings where diseases are present and/or widespread, much of the analysis provided is relevant to HCS (in HICs or LMICs) involving pandemic diseases including COVID19. (shrink)

Central to the argument of ‘Biodefense and the Production of Knowledge: Rethinking the Problem’ are claims that the vast majority of ethical debate about biodefense research to date has focused on the dual use problem, and the focus of ethical discussion of dual-use research has been on the need to strike ‘a proper balance of only two dominant values: biosecurity and “open science”’ —the idea being that ‘under current conditions other values can and ought to be ignored because the stakes (...) are so high’.1With regard to , Buchanan and Kelley's main point is that policy making regarding biodefense and dual use should be seen as an ‘optimisation problem’—the aim should be to achieve the greater good of society, where all relevant values are taken into account, rather than limiting attention to just two values—security and open science—in particular. While, as other commentators have argued, it is questionable whether these authors have provided an accurate account of ethical discussion of biodefense and dual use to date, in this brief commentary my purpose is to argue that the values of security and open science should themselves be seen as proxies for other values and that solution to …. (shrink)

This first part of this article critiques Sridhar Venkatapuram's conception of health as a capability. It argues that Venkatapuram relies on the problematic concept of dignity, implies that those who are unhealthy lack lives worthy of dignity, sets a low bar for health, appeals to metaphysically problematic thresholds, fails to draw clear connections between appealed-to capabilities and health, and downplays the importance/relevance of health functioning. It concludes by questioning whether justice entitlements should pertain to the capability for health versus health (...) achievements, challenging Venkatapuram's claims about the strength of health entitlements, and demonstrating that the capabilities approach is unnecessary to address social determinants of health. (shrink)

Whether or not MSF should provide unconditional treatment for lead poisoning in Nigeria partly depends on answers to empirical questions regarding what the overall consequences of such a practice are likely to be. Conditional provision of treatment may yield greater health benefits (especially if treatment resources are limited).

Emergencies are extreme events which threaten to cause massive disruption to society and negatively affect the physical and psychological well-being of its members. They raise important practical and theoretical questions about how we should treat each other in times of 'crisis'. The articles selected for this volume focus on the nature and significance of emergencies, demonstrate the normative implications of emergencies and provide multi-disciplinary perspectives on the ethics of emergency response.

Health Rights is a multidisciplinary collection of seminal papers examining ethical, legal, and empirical questions regarding the human right to health or health care. The volume discusses what obligations health rights entail for governments and other actors; how they relate to and potentially conflict with other rights and values; and how cultural diversity bears on the formulation and implementation of health rights.

In light of controversy surrounding the initial online publication of Alberto Giubilini and Francesca Minerva's article on ‘After-birth abortion: why should the baby live?’ in the Journal of Medical Ethics,1 ….

This chapter contains sections titled: The Ethical Importance of Infectious Disease The Global Infectious Disease Status Quo: AIDS and TB Drug Resistance Limiting Liberty in Contexts of Contagion Improving Global Health References Further reading.

ABSTRACTThis module examines ethical debates about the level of care that should be provided to human research participants. Particular attention is placed on the question of what should be considered an ethically acceptable control arm. You will also learn what relevant international and domestic regulatory documents say about standards of care.

People are worried that advances in genetics will lead to a revival of eugenics. Such worries are often associated with eugenic practices carried out early in the 20th century---the forcible sterilization of feebleminded persons in the United States and the Nazi program of Racial Hygiene. A "new eugenics" involving prenatal genetic testing and the selective abortion of fetuses diagnosed with severe genetic disorders might, nonetheless, be acceptable. In chapter one I examine the history of eugenics and discuss what might make (...) a new eugenics more tolerable. ;Chapters two and three discuss reproductive decision making by individuals . Chapter 2 investigates the morality of abortion. I conclude that the moral status of the fetus is ultimately uncertain. In exceptional circumstances, such as the case where a fetus would develop into a severely disabled infant, there are good reasons for thinking that abortion is morally permissible. It is plausible, for example, that the value of a fetal life is a function of its future quality of life. ;In chapter three I discuss what quality of life consists in. I develop a pluralistic perspective according to which quality of life is a function of multiple independent components. When deciding to bring a child into existence parents should consider the quality of life expected for the child and also take into account the likely impact on their own lives, the lives of other family members, and society as a whole. ;Chapter four asks whether or not governmental restrictions should be placed on the kinds of genetic interventions which will be permitted. A worry is that interventions aimed at enhancement would only be available to the financially fortunate and thus promote unjust social inequalities. Another worry is that the development and use of such interventions would drain medical resources away from more fruitful purposes and thus have a negative impact on aggregate utility. The social aim to promote liberty, on the other hand, speaks against the imposition of restrictions. Faced with conflicting social values, we need to think more about how to make trade-offs between liberty, equality, and aggregate utility. (shrink)