Bioethics for human geneticists: models for reasoning and methods for teaching.

The ethical issues raised by the Human Genome Project (HGP) and by human genetics in general are not entirely novel. In fact, the ethical issues surrounding genetic research and the provision of genetic services fit into the evolution of bioethics, a field of inquiry which has its roots in concerns of the 1970s, concerns about the dignity and self-determination of individuals and about the development of medical technologies. Although bioethics has been largely occupied with patient-centered concerns, attention is currently shifting toward socially oriented issues, such as the justice of the existing health-care system. Genetic counseling has already incorporated many of the lessons of early bioethics and, as a profession, adheres to a consultand-centered ethic which reflects the values incorporated into the doctrine of informed consent, which is a cornerstone of bioethics. The mandate of the Ethical, Legal, and Social Implications Program of the HGP--to anticipate ethical problems arising from advances in genetics and to educate the public about genetics--reflects not only the nonpaternalistic approach of early bioethics but also bioethics' increasing attention to the ethical import of systemic and institutional factors, as well as an anticipatory and preventive approach to dealing with ethical concerns. Because bioethics has so much to contribute to current consideration of ethical issues in human genetics, it is important to provide training in ethics to those working in the field. Guidelines for using a case-oriented approach are suggested.     

Informed Consent and Genetic Information

In the last 25 years writing in bioethics, particularly in medical ethics, has generally claimed that action is ethically acceptable only if it receives informed consent from those affected. However, informed consent provides only limited justification, and may provide even less as new information technologies are used to store and handle personal data, including personal genetic data. The central philosophical weakness of relying on informed consent procedures for ethical justification is that consent is a propositional attitude, so referentially opaque: consent is given to specific propositions describing limited aspects of a situation, and does not transfer even to closely related propositions. Assembling genetic data in databases creates additional difficulties for ethical justification. This is not because genetic information is intrinsically exceptional, but because the merger of genetic and information technologies make it possible to assemble massive quantities of complex information that defeat individuals' best efforts to grasp what is at stake, or to give or withhold informed consent. The future agenda for bioethics will need to take account of both these limitations of appeals to informed consent.     

“Bioethics in Action” and Human Population Genetics Research

Recent disputes about human population genetics research have been provoked by the field's political vulnerability (the historic imbalance of power between the geneticists and the people they study) and conceptual vulnerability (the mismatch between scientific and popular understandings of the genetic basis of collective identity). The small, isolated groups often studied by this science are now mobilizing themselves as political subjects, pressing sovereignty claims, and demanding control over the direction and interpretation of research. Negotiations between the geneticists and the people asked to donate DNA have resulted not only in explicit bioethics protocols but also in diffuse anxiety over the incommensurability between expert and non-expert views about genetic evidence for identity claims. This article compares two disputes over genetics research: the Human Genome Diversity Project and the use of genetics to prove identity claims among the Melungeons of Tennessee. The case studies illustrate “bioethics in action”: how particular controversies and interests drive the production of bioethics discourses and techniques (such as informed consent protocols). They also illustrate some limits on the usual apparatus of bioethics in overcoming this science's multiple vulnerabilities.     

The Concept of Human Dignity in the Ethics of Genetic Research

Despite criticism that dignity is a vague and slippery concept, a number of international guidelines on bioethics have cautioned against research that is contrary to human dignity, with reference specifically to genetic technology. What is the connection between genetic research and human dignity? In this article, I investigate the concept of human dignity in its various historical forms, and examine its status as a moral concept. Unlike Kant's ideal concept of human dignity, the empirical or relational concept takes human dignity as something that is affected by one's circumstances and what others do. I argue that the dignity objection to some forms of genetic research rests on a view of human nature that gives humans a special status in nature – one that is threatened by the potential of genetic research to reduce individuals to their genetic endowment. I distinguish two main philosophical accounts of human nature. One of these, the Aristotelian view, is compatible with the use of genetic technology to help humans realize their inherent potential to a fuller extent.     

克隆技术引发的伦理之争

自从克隆羊多莉诞生以来,有关克隆人的伦理学争论就一直喋喋不休。世界上的各种政治组织和各国政府都明确反对生殖性克隆,而科学家们则对克隆技术的不完善心存疑虑。为了克服克隆过程中的伦理学障碍和技术缺陷,科学家们在核移植技术的基础上,又发展了异种核移植技术、诱导多能干细胞技术等。诱导的多能干细胞可以分化成各种组织,甚至能发育成个体,这些方法使克隆技术不再破坏胚胎,避免了伦理学纠纷。尽管科学技术在进步,但是人们对克隆人仍有很多不解和困惑。从自主、不伤害、行善和公正等四大生命伦理学原则着手,在技术层面上提出了尽管克隆人不会搞乱人际关系,不会减少人类基因多样性,也不会克隆出类似希特勒的战争狂人,但是,人类的生殖性克隆却剥夺了克隆人的自主性,对克隆人的生理和心理都有所伤害,违反了公正和行善的原则。因此,是否可以克隆人在伦理上仍然是需要长期讨论的问题。     

Bioethics: power and injustice: IAB presidential address

A major focus within the modern bioethics debate has been on reshaping power relationships within the doctor-patient relationship. Empowerment of the vulnerable has been achieved through an emphasis on human rights and respect for individual dignity. However, power imbalances remain pervasive within healthcare. To a considerable extent this relates to insufficient attention to social injustice. Such power imbalances together with the development of new forms of power, for example through new genetic biotechnology, raise the spectre of increasing social injustice. Attention will be drawn to the need to extend the bioethics debate to include ethical considerations regarding public health. Changes in political philosophy will also be required to reshape international power relations and improve population health.     

The genesis of public health ethics

As bioethics emerged in the 1960s and 1970s and began to have enormous impacts on the practice of medicine and research – fuelled, by broad socio‐political changes that gave rise to the struggle of women, African Americans, gay men and lesbians, and the antiauthoritarian impulse that characterised the New Left in democratic capitalist societies – little attention was given to the question of the ethics of public health. This was all the more striking since the core values and practices of public health, often entailing the subordination of the individual for the common good, seemed opposed to the ideological impulses of bioethics. Of what relevance is autonomy‐focused bioethics for public health, with its mix of justifications including those that are either implicitly or explicitly paternalistic or that seek to impose strictures on individuals and communities in the name of collective welfare? To examine the deep divide between the central commitments of bioethics and the values that animate the practice of public health, we focus on a series of controversies implicating the concepts of privacy, liberty, and paternalism. Recognising the role of moral values in decision‐making was a signal contribution of bioethics in its formative period. Over the past three decades a broad array of perspectives emerged under the rubric of bioethics but individualism remains central. As we commence the process of shaping an ethics of public health, it is clear that bioethics is the wrong place to start when thinking about the balances required in defence of the public's health.     

Between Relativism and Imperialism: Navigating Moral Diversity in Cross‐Cultural Bioethics

The need for explicit theoretical reflection on cross‐cultural bioethics continues to grow as the spread of communication technologies and increased human migration has made interactions between medical professionals and patients from different cultural backgrounds much more common. I claim that this need presents us with the following dilemma. On the one hand, we do not want to operate according to an imperialist ethical framework that denies and silences the legitimacy of cultural values other than our own. On the other hand, we do not want to backslide into a form of cultural relativism that is unable to critically appraise cultural practices that are harmful, unjust, or oppressive. I examine two prominent attempts – the principlism of Tom Beauchamp and James Childress and the Contractarianism of Robert Baker – to frame cross‐cultural bioethics between these two extremes and argue that both approaches have significant flaws. The principlist approach fails to provide a non‐question begging way to identify cross‐cultural norms that does not already assume the universal legitimacy of moral principles dominant in North American society. Baker's contractarianism cannot grapple with the realities of political power imbalances that often characterize cross‐cultural moral disputes. I suggest that a naturalized feminist framework, though not free of its own theoretical difficulties, provides the best alternative for approaching moral diversity respectfully and critically.     

The presence and influence of religion in American bioethics

From the inception of the relatively short history of American bioethics in the mid-to-late 1960s, the place of religion in this field has been complex and controversial. It has also been a subject of more than casual interest and concern to bioethicists, and to an array of medical and non-medical groups in U.S. society for whom the activities and issues in which bioethics is engaged have ongoing import. The questions and the tensions linked to the status and influence of religion in the sphere of bioethics have ramifications that extend beyond bioethics and biomedicine into matters involving the relationship of religion to the institutional structure of American society--most particularly its political, legal foundations, and realm of public affairs--and to its cultural attributes and tradition. It is within this larger perspective that we will consider the association between American bioethics and religion. Our analysis includes two case studies: (1) how, in the early years of bioethics, a pioneering organization in the field dealt with the "redefinition of death" in its discussions and in a major medical journal publication; and (2) the way in which the most recently appointed federal bioethics commission, the National Bioethics Advisory Commission, involved religion in its work on cloning and stem cell research.     

African Bioethics vs. Healthcare Ethics in Africa: A Critique of Godfrey Tangwa

It is nearly two decades now since the publication of Godfrey Tangwa's article, ‘Bioethics: African Perspective’, without a critical review. His article is important because sequel to its publication in Bioethics, the idea of ‘African bioethics’ started gaining some attention in the international bioethics literature. This paper breaks this relative silence by critically examining Tangwa's claim on the existence of African bioethics. Employing conceptual and critical methods, this paper argues that Tangwa's account of African bioethics has some conceptual, methodic and substantive difficulties, which altogether do not justify the idea of African bioethics, at least for now. Contra Tangwa, this article establishes that while African bioethics remains a future possibility, it is more cogent that current efforts in the name of ‘African bioethics’ be primarily re‐intensified towards ‘Healthcare ethics in Africa’.     

A more-than-human approach to bioethics: The example of digital health

Digital health technologies are often advocated as a way of helping people monitor, promote and manage their health, care for others and reduce the burden on healthcare systems. Yet these technologies have also been subject to criticism for limiting human flourishing and exacerbating socioeconomic disadvantage. Bioethical appraisals of digital health technologies tend to take a conventional risk-benefit approach, positioning the human subject as a rational, autonomous agent who is acted on by technologies. In this paper, I present a case for adopting an alternative more-than-human perspective on bioethics. A more-than-human approach considers human-technological assemblages and agencies as distributed, relational, situated and emergent. To illustrate the insights that this perspective can offer, I draw on the findings of four empirical projects I have conducted on people’s use of digital devices and platforms used for health-related purposes, including social media groups and online forums, mobile apps and wearable devices. I conclude with the argument that a more-than-human approach to bioethics can begin to incorporate a new ‘zoë ethics’ that can acknowledge and address the deeper affective, multisensory and relational dimensions of humans’ encounters with and enactments of material things and nonhuman creatures.     

From Eden to a hell of uniformity? directed evolution in humans

For the first time during evolution of life on this planet, a species has acquired the ability to direct its own genetic destiny. Following 200,000 years of evolution, modern man now has the technologies not only to eradicate genetic disease but also to prolong life and enhance desired physical and mental traits. These technologies include preimplantation diagnosis, cloning, and gene therapy in the germline on native chromosomes or by adding artificial ones. At first glance, we should all be in favor of eliminating genetic diseases and enhancing genetic traits. Evolutionary considerations, however, uncover hidden dangers and suggest caution against the total embracement of such actions. The first major concern is that the genome will never be a completely reliable crystal ball for predicting human phenotypes. This is especially true for predictions concerning the performance of alleles in future generations whose populations might be subjected to different environmental and social challenges. The second, and perhaps more important, concern is that the end result of germline intervention and genetic enhancement will likely lead to the impoverishment of gene variants in the human population and deprive us of one of our most valued assets for survival in the future, our genetic diversity.     

Bioethics and conflicts of interest

Bioethics has been subject to considerable social criticism in recent years. One criticism that has caused particular discomfort in the bioethics community is that bioethicists, because of the way their work is funded, are involved in profound conflicts of interest that undermine their title to be considered independent moral commentators on developments in biomedicine and biotechnology. This criticism draws its force from the assumption that bioethics is, or ought to be, a type of normative social criticism. Versions of this criticism come from both the political left and right. For instance, such criticisms include allegations that bioethics is inherently socially conservative, that it is inherently “pro-technology”, that it lays spurious claims to moral and social authority and expertise, that its focus on autonomy links it to neoliberal theories of choice, and that it is an ideological mystification of real social relationships and political power. This commentary paper analyses the problem of bioethical conflict of interest, and argues that the types of conflict of interest facing bioethics are inherent to the role of “public intellectual” that bioethicists generally wish to assume. The paper defends this conception of the role of the bioethicist, arguing that bioethicists should be interested and openly so.     

‘You Say You’re Happy, but…’: Contested Quality of Life Judgments in Bioethics and Disability Studies

In this paper, I look at several examples that demonstrate what I see as a troubling tendency in much of mainstream bioethics to discount the views of disabled people. Following feminist political theorists who argue in favour of a stance of humility and sensitive inclusion for people who have been marginalized, I recommend that bioethicists adopt a presumption in favour of believing rather than discounting the claims of disabled people. By taking their claims at face value and engaging with disabled people in open dialogue over impairment and disadvantage, bioethicists may take to heart an important lesson about human fragility and resilience.     

Genetic equity

This paper proposes, elaborates and defends a principle of genetic equity. In doing so it articulates, explains and justifies what might be meant by the concept of 'human dignity' in a way that is clear, defensible and consistent with, but by no means the same as, the plethora of appeals to human dignity found in contemporary bioethics, and more particularly in international instruments on bioethics. We propose the following principle of genetic equity: humans are born equal; they are entitled to freedom from discrimination and equality of opportunity to flourish; genetic information may not be used to limit that equality.     

2009 Society for Medical Anthropology Conference: From Race to Repositories: Bioethics in a Genomics Age

Medical anthropologist Barbara Koenig spoke on the intersection of bioethics and genomics at the 2009 Society for Medical Anthropology Conference at Yale University in New Haven, Connecticut.Medical anthropologist Barbara Koenig is at the forefront of numerous endeavors that seek to understand race in the age of genomics and protect human subjects with regard to DNA repositories. Through a dialogue ranging from the history and critiques of bioethics to her own research projects, Koenig brought her respect and excitement for the anthropology found in biomedicine to the 2009 Society for Medical Anthropology conference at Yale University in September.As a whole, the space in which bioethics operates does not constitute a “field” in the traditional sense. It is an amalgam of approaches to the social, ethical, and cultural issues surrounding biology and medicine. While the prevalent medical ethic for 2,500 years has been understood to be embodied in the Hippocratic Oath [1], the modern age of biomedical research and clinical practice demands more careful inspection of ethical issues in biology and medicine. This precise space is where bioethics has found fertile ground for investigation. For Koenig, anthropological analysis and, more specifically, empirical ethnographic study are critical tools to tease apart the complexities of bioethical issues.Recently, Koenig, a professor of medicine at the Mayo Clinic, has considered the definitions of race in light of the emerging work of genomics [2,3]. Her book, Revisiting Race in a Genomic Age, argues that the complex definitions of race are an interesting blend of biological differences and cultural traditions. Often in modern society, the unity assumed among a racial group is at odds with the underlying biological diversity revealed by genomics. And yet individuals in our species are much more related to one another than, for example, any two chimps are related. It is clear from the much-cited work of the Human Genome Project [4,5] and the International HapMap Consortium [6] that genomics will have a deeply profound impact on how we understand our ancestry and how easily individuals will be able to trace their own origins using modern genetic technologies.Hints at new implications in personalized medicine also have come to light, showing that different patient populations, distinguished by race, can have significantly different responses to drugs [7,8]. Increasingly, race is used as a categorization to parse individuals for the purposes of biomedical research. These categories are themselves areas of contention, as they are socially constructed. Individuals may identify themselves with different racial categories depending on the context in which the identifiers are provided. Furthermore, it is unclear what implications can be drawn from the studies in which researchers are asked to conclude something about a social identity based on biological data. Research in these areas undoubtedly will provide insightful anthropological analysis in the coming years.Much of bioethics is concerned with the issues surrounding new medical technologies and their impact on society. In this same vein, the advent of sequencing databases and direct-to-consumer genetic tests has had broad implications for the participants. At the Mayo Clinic, Koenig is working on the development of a centralized biobank. This facility will store DNA samples collected from patients with a wide range of diseases and enable easy access for clinicians and scientists interested in studying a given disease. However, as with any collection of information, there is a question of access. Who can see what information? How will this be regulated? And to what extent is informed consent required for each of the future uses of the collected sample?There has been much public debate regarding the ethical use of forensic DNA databases [9,10] and yet less public consideration concerning the medical DNA databases. Koenig spoke of attempts to create community understanding beyond the informed consent standard. An auxiliary issue related to the social impacts of new genetic methods is the emergence of direct-to-consumer genetic testing. Currently, certain companies market to the public with the promise of assessing the customer’s genetic profile in order to identify genetic risk factors for disease. Without the intermediary of a health care provider to validate the analysis and contextualize the risk, these tests can have an alarming and bewildering effect on consumers. How should one understand an 8 percent increase in colorectal cancer risk relative to the general population? Certainly, these new technologies and the companies pushing them directly to the consumer public are of profound anthropological interest.While some anthropologists analyze trends and conduct surveys to understand their subjects, Koenig has entrenched herself within the clinic and on advisory boards to shape the outcome of bioethical issues facing our society in a time of ever-changing technologies. She has done so with a firm foundation in the historical perspective and practical ethic of biomedicine.     

分子标记在家畜遗传多样性研究中的应用

家畜遗传多样性是生物多样性的重要组成部分,与人类未来的生存与发展密切相关。中国拥有丰富的地方家畜品种资源,但由于保种不当和盲目引进外来品种进行杂交、资金缺乏等原因,许多品种已濒临灭绝。如何保存利用好我国优良的家畜遗传资源已成为越来越严峻的问题。随着生物学技术的不断发展与完善,许多分子标记技术已经应用于畜禽遗传资源的研究。简要介绍了在家畜遗传多样性研究中应用最广的几种分子标记及其特性,讨论了在家畜遗传多样性的研究中如何选用适当的分子标记。     

HOW WILL THE ECONOMIC DOWNTURN AFFECT ACADEMIC BIOETHICS?

An educated guess about the future of academic bioethics can only be made on the basis of the historical conditions of its success. According to its official history, which attributes its success primarily to the service it has done for the patient, it should be safe at least as long as the patient still needs its service. Like many other academic disciplines, it might suffer under the present economic downturn. However, in the plausible assumption that its social role has not been exhausted yet, it should recover as soon as the economy does. But if, as this paper tries to argue, the success of academic bioethics should be attributed first and foremost to the service it has done for the neoliberal agenda, then its future would have to depend on the fate of the latter. The exact implications of the downturn for the neoliberal agenda are obviously impossible to predict. Among the various options, however, the one of going back to ‘normal’ seems to be the least likely. The other options suggest that the future of academic bioethics, as we have known it, is bleak.     

The inevitability of genetic enhancement technologies

We outline a number of ethical objections to genetic technologies aimed at enhancing human capacities and traits. We then argue that, despite the persuasiveness of some of these objections, they are insufficient to stop the development and use of genetic enhancement technologies. We contend that the inevitability of the technologies results from a particular guiding worldview of humans as masters of the human evolutionary future, and conclude that recognising this worldview points to new directions for ethical thinking about genetic enhancement technologies.     

从生命伦理到生命法

20世纪下半叶以来,生命科技的发展极大地增进了人类的福祉,但也引生了大量伦理与法律问题,使得生命科技的伦理调整与法律规范成为必然。在生命科技发展的过程中,生命伦理发挥了重要的引领作用,它以其自身特定的机制保障着生命科技的健康发展。生命伦理与生命法存在着明显区别,这些区别使得生命伦理在现代生命科技社会中无法独立承担引领生命科技健康发展的使命,而必须与生命法共同在生命科技社会治理中发挥作用。在现代生命科技社会中,生命法具有不可取代的重要作用,正是基于此,20世纪70年代以来,各国兴起了一场生命伦理法律化的运动,纷纷强化了本国的生命法制建设,改变了以往单纯依赖生命伦理调整生命科技活动的历史,使法律也参与到生命科技的规制中来。人类生命科技治理必然要经历一个由单纯依赖生命伦理到依赖生命法与生命伦理相结合的发展阶段。当前,我国生命立法还存在诸多不足,难以适应生命科技发展的现实需要,需要采取相应的完善对策。