As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced (...) and defended for the HGP by the nematode biologists John Sulston and Robert Waterston. In the C. elegans community, and subsequently in the HGP, daily sharing served the pragmatic goals of quality control and project coordination. Yet in the HGP human genome, we also argue, the Bermuda Principles addressed concerns about gene patents impeding scientific advancement, and were aspirational and flexible in implementation and justification. They endured as an archetype for how rapid data sharing could be realized and rationalized, and permitted adaptation to the needs of various scientific communities. Yet in addition to the support of Sulston and Waterston, their adoption also depended on the clout of administrators at the US National Institutes of Health and the UK nonprofit charity the Wellcome Trust, which together funded 90% of the HGP human sequencing effort. The other nations wishing to remain in the HGP consortium had to accommodate to the Bermuda Principles, requiring exceptions from incompatible existing or pending data access policies for publicly funded research in Germany, Japan, and France. We begin this story in 1963, with the biologist Sydney Brenner’s proposal for a nematode research program at the Laboratory of Molecular Biology at the University of Cambridge. We continue through 2003, with the completion of the HGP human reference genome, and conclude with observations about policy and the historiography of molecular biology. (shrink)

The focus of this paper are the ethical, legal and social challenges for ensuring the responsible use of “big brain data”—the recording, collection and analysis of individuals’ brain data on a large scale with clinical and consumer-directed neurotechnological devices. First, I highlight the benefits of big data and machine learning analytics in neuroscience for basic and translational research. Then, I describe some of the technological, social and psychological barriers for securing brain data from unwarranted access. In this context, I then (...) examine ways in which safeguards at the hardware and software level, as well as increasing “data literacy” in society, may enhance the security of neurotechnological devices and protect the privacy of personal brain data. Regarding ethical and legal ramifications of big brain data, I first discuss effects on the autonomy, the sense of agency and authenticity, as well as the self that may result from the interaction between users and intelligent, particularly closed-loop, neurotechnological devices. I then discuss the impact of the “datafication” in basic and clinical neuroscience research on the just distribution of resources and access to these transformative technologies. In the legal realm, I examine possible legal consequences that arises from the increasing abilities to decode brain states and their corresponding subjective phenomenological experiences on the hitherto inaccessible privacy of these information. Finally, I discuss the implications of big brain data for national and international regulatory policies and models of good data governance. (shrink)

For thirty years, Peter Singer's Practical Ethics has been the classic introduction to applied ethics. For this third edition, the author has revised and updated all the chapters and added a new chapter addressing climate change, one of the most important ethical challenges of our generation. Some of the questions discussed in this book concern our daily lives. Is it ethical to buy luxuries when others do not have enough to eat? Should we buy meat from intensively reared animals? Am (...) I doing something wrong if my carbon footprint is above the global average? Other questions confront us as concerned citizens: equality and discrimination on the grounds of race or sex; abortion, the use of embryos for research and euthanasia; political violence and terrorism; and the preservation of our planet's environment. This book's lucid style and provocative arguments make it an ideal text for university courses and for anyone willing to think about how she or he ought to live. (shrink)

A comprehensive study of the ethics of killing in cases in which the metaphysical or moral status of the individual killed is uncertain or controversial. Among those beings whose status is questionable or marginal in this way are human embryos and fetuses, newborn infants, animals, anencephalic infants, human beings with severe congenital and cognitive impairments, and human beings who have become severely demented or irreversibly comatose. In an effort to understand the moral status of these beings, this book develops and (...) defends distinctive accounts of the nature of personal identity, the evaluation of death, and the wrongness of killing. The central metaphysical claim of the book is that we are neither nonmaterial souls nor human organisms but are instead embodied minds. In ethical theory, one of the central claims is that the morality of killing is not unitary; rather, the principles that determine the morality of killing in marginal cases are different from those that govern the killing of persons who are self‐conscious and rational. Another important theme is that killing in marginal cases should be evaluated in terms of the impact it would have on the victim at the time rather than on the value of the victim's life as a whole. What primarily matters is how killing would affect that which would be rational for the victim to care about at the time of death. By appealing to various foundational claims about identity, death, and the morality of killing, this book yields novel conclusions about such issues as abortion, prenatal injury, infanticide, the killing of animals, the significance of brain death, the termination of life support in cases of persistent vegetative state, the use of anencephalic infants as sources of organs for transplantation, euthanasia, assisted suicide, and advance directives in cases of dementia. In particular, the book defends the moral permissibility of abortion, infanticide, and euthanasia in certain cases and argues that brain death is not the appropriate criterion of death either for a person or a human organism. (shrink)

Ethical concepts are, or purport to be, normative. They make claims on us: they command, oblige, recommend, or guide. Or at least when we invoke them, we make claims on one another; but where does their authority over us - or ours over one another - come from? Christine Korsgaard identifies four accounts of the source of normativity that have been advocated by modern moral philosophers: voluntarism, realism, reflective endorsement, and the appeal to autonomy. She traces their history, showing how (...) each developed in response to the prior one and comparing their early versions with those on the contemporary philosophical scene. Kant's theory that normativity springs from our own autonomy emerges as a synthesis of the other three, and Korsgaard concludes with her own version of the Kantian account. Her discussion is followed by commentary from G. A. Cohen, Raymond Geuss, Thomas Nagel, and Bernard Williams, and a reply by Korsgaard. (shrink)

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that (...) patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk. (shrink)