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)

Although transplantation surgeries are relatively successful and save the lives of many, only few are willing to donate organs. In order to better understand the reasons for donation or refusing donation and their implications on and influence by public policy, we conducted a survey examining public views on this issue in Israel. Between January and June 2010, an anonymous questionnaire based on published literature was distributed among random and selected parts of Israeli society and included organ recipients, organ donors, soldiers, (...) university and high school students, and the general population. The analysis of 799 questionnaires revealed that, although 74.7 percent have not signed a donor card, 60.8 percent of participants consider doing so. Additionally, 54.3 percent of respondents objected to giving or receiving compensation for donation, and, if at all, priority in transplantation care is the most desired form of such compensation. The health status of the donor and knowing that donation saves lives or that there exists a shortage of organs for transplantation are the two factors most affecting motivation to donate. Lack of information, relatives’ views on donation, and type of organ involved in donation are factors most inhibiting donation. Willingness to donate is significantly affected by the proximity of the recipient to the donor. With regard to most organs, their contribution to one’s sense of “self” and its symbolic role strongly affects motivation to donate, except for donation to relatives. Compensation for organ donation has little effect on motivation to donate during life and after death. Our findings suggest new ways to construct a more effective public policy on this issue. (shrink)

If pressed to identify the philosophical foundations of contemporary bioethics, most bioethicists would cite the four-principles approach developed by Tom L Beauchamp and James F Childress,1 or perhaps the ethical theories of JS Mill2 or Immanuel Kant.3 Few would cite Aristotle's metaphysical views surrounding death and posthumous harm.4 Nevertheless, many contemporary bioethical discussions are implicitly grounded in the Aristotelian views that death is a harm to the one who dies, and that persons can be harmed, or wronged, by events that (...) occur after their deaths. The view that death is a harm to the one who dies infuses, for example, the debates over abortion and euthanasia, while the view that persons could be harmed or wronged after their deaths informs much of the debate over, for example, policies for the posthumous procurement of transplant and the ethics of research on the dead.In Death, Posthumous Harm, and Bioethics, I argue that we should reject this cluster of influential Aristotelian thanatological claims, and instead endorse a trio of views that together constitute what I term full-blooded epicureanism: That death is not a harm to the person who dies, and that persons can neither be harmed nor wronged by events that occur after their deaths. …. (shrink)

advanced directivesend-of-life decisionsharming the deadposthumous reproductiontransplant ethics.

The article examines the writings of one of the most influential political philosophers, Hannah Arendt, and specifically focuses on her views regarding the distinction between the private and the public and the transformation of the public to the social by modernity. Arendt’s theory of human activity and critique of modernity are explored to critically evaluate the social contributions and implications of reproductive technologies especially where the use of such technologies is most dominant within Western societies. Focusing on empirical studies on (...) new reproductive technologies in Israel, it is argued, powerfully demonstrates Arendt’s theory, and broadens the perspectives through which society should evaluate these new technologies towards a more reflective understanding of its current laws and policies and their affect on women more generally. (shrink)

The moral authority of advance directives as a vehicle of precedent autonomy is highly problematic in cases of severe dementia of the Alzheimer’s type. It is unclear how personal values and interests can be enforced by means of such an advance directive; at the stage of severe dementia the distal binding powers of precedent autonomy have expired; and the moral costs of removing another human being from life are very high. It transpires that in fine drawing up an advance directive (...) in the face of Alzheimer is an inappropriate method of orchestrating one’s future care and death. This leaves persons diagnosed with Alzheimer’s disease with two morally preferable alternatives. One is that they accept that, when severe dementia is setting in, autonomy is not an issue; others decide. The second is that they commit pre-emptive suicide after Alzheimer’s disease is diagnosed. (shrink)