Discussions about brain data and privacy, particularly those advocating for human rights frameworks, at times, have embodied problematic undercurrents of, if not overt appeals to, neuro-exceptional...

EPUB and EPDF available Open Access under CC-BY-NC-ND licence. We tend to hold people responsible for their choices, but not for what they can’t control: their nature, genes or biological makeup. This thought-provoking collection redefines the boundaries of moral responsibility. It shows how epigenetics reveals connections between our genetic make-up and our environment. The essays challenge established notions of human nature and the nature/nurture divide and suggest a shift in focus from individual to collective responsibility. Uncovering the links between our (...) genetic makeup, environment and experiences, this is an important contribution to ongoing debates on ethics, genetics and responsibility. (shrink)

Volume 19, Issue 11, November 2019, Page 29-31.

Berry, Daniels, and Ladin make a strong argument for discontinuing the use of, “lack of social support,” as an organ transplantation listing criterion. This argument, however, actually leads to conclusions much stronger than those that the authors’ propose: The argument works equally well against using, (1) any “psychosocial” factors at all as a listing criterion, and, (2) any criteria other than factors that directly relate to empirically established medical need, and/or empirically established survival rate. Moreover, while the authors rightly point (...) to a lack of empirical evidence connecting social support to survivability, they neglect mentioning that the empirical literature on social support provides grounds to favor listing persons who seem to, sadly, lack a social support system. (shrink)

In this paper, I reflect on an important article by Bob Veatch in the inaugural issue of the Hastings Center Report, entitled “Experimental Pregnancy.” It is a report and elegant analysis of the Goldzieher Study, in which nearly 400 women were randomized to receive hormonal contraception or placebo absent consent or disclosure about placebo use, resulting in several pregnancies. Noting the study’s limited notoriety, I first consider the narratives that have instead dominated bioethics’ approach to pregnancy and research: thalidomide and (...) diethylstibesterol. These narratives have facilitated a narrow focus on avoiding fetal risk, to the exclusion of other ethically relevant considerations. I then revisit “Experimental Pregnancy” and offer two ways in which Bob’s analysis serves as an important corrective, first, by foregrounding research subjects, and second, by normalizing pregnancy and thus foregrounding foundational ethical considerations that are sometimes lost amidst pregnancy’s presumed exceptionalism. (shrink)

In their paper Horton et al argue that it is acceptable to contact an anonymous egg-donor to facilitate diagnostic genetic testing for the donor conceived child, despite the donor, ‘indicating on a historical consent form that she did not wish to take part in future research, and that she did not wish to be informed if she was found to be a carrier of a “harmful inherited condition”’. There are a number of claims embedded in Horton et al’s position that (...) it is acceptable to contact the donor and request that she at least think about participating in genetic testing. In this response. I will go through their main claims and argue that the area of genomic medicine does not justify exceptions to general consent conditions as the authors suppose and conclude that the donor should not be contacted. I will then go on to suggest a policy change that would address Horton et al’s concerns but would not involve over-riding any previously expressed wishes. (shrink)

Volume 19, Issue 11, November 2019, Page 37-39.

While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been la...

Despite the ever-changing field of artificial intelligence (AI) and its preponderance of pre-print articles, Cohen offers a timely, nuanced, and self-aware overview of ChatGPT and the world of Larg...

In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...) research, its intrinsic value is grounded in respect for the dignity of the post-mortem informational entity. However, existing guidance on post-mortem data protection is available only in the context of genetic studies. In comparing the characteristics of genetic data and other health-related data, we identify two features of DNA often given as arguments for this genetic exceptionalism: relationality and embodiment. We use these concepts to show that at the appropriate Level of Abstraction, there is no morally relevant distinction between posthumous genetic and other health data. Thus, genetic data should not automatically receive special moral status after death. Instead we make a plea for ‘contextual exceptionalism’. Our analysis concludes by reflecting on a real-world case and providing suggestions for contextual factors that researchers and oversight bodies should take into account when designing and evaluating research projects with health data from deceased subjects. (shrink)