David W Evans

Normative consent and presumed consent for organ donation: a critique

Ben Saunders claims that actual consent is not necessary for organ donation due to ‘normative consent’, a concept he borrows from David Estlund. Combining normative consent with Peter Singers ‘greater moral evil principle’, Saunders argues that it is immoral for an individual to refuse consent to donate his or her organs. If a presumed consent policy were thus adopted, it would be morally legitimate to remove organs from individuals whose wishes concerning donation are not known. This paper disputes Saunders arguments. First, if death caused by the absence of organ transplant is the operational premise, then, there is nothing of comparable moral precedence under which a person is not obligated to donate. Saunders use of Singers principle produces a duty to donate in almost all circumstances. However, this premise is based on a flawed interpretation of cause and effect between organ availability and death. Second, given growing moral and scientific agreement that the organ donors in heart-beating and non-heart-beating procurement protocols are not dead when their organs are surgically removed, it is not at all clear that people have a duty to consent to their lives being taken for their organs. Third, Saunders claim that there can be good reasons for refusing consent clashes with his claim that there is a moral obligation for everyone to donate their organs. Saunders argument is more consistent with a conclusion of ‘mandatory consent’. Finally, it is argued that Saunders policy, if put into place, would be totalitarian in scope and would therefore be inconsistent with the freedom required for a democratic society.

The ethics of limiting informed debate: censorship of select medical publications in the interest of organ transplantation.

Recently, several articles in the scholarly literature on medical ethics proclaim the need for responsible scholarship in the debate over the proper criteria for death, in which responsible scholarship is defined in terms of support for current neurological criteria for death. In a recent article, James M. DuBois is concerned that academic critiques of current death criteria create unnecessary doubt about the moral acceptability of organ donation, which may affect the publics willingness to donate. Thus he calls for a closing of the debate on current death criteria and for journal editors to publish only critiques that substantially engage and advance the debate. We argue that such positions as DuBois are a threat to responsible scholarship in medical ethics, especially scholarship that opposes popular stances, because it erodes academic freedom and the necessity of debate on an issue that is literally a matter of life and death, no matter what side a person defends.

An activist's argument that participant values should guide risk–benefit ratio calculations in HIV cure research

The patient empowerment movement, spurred by AIDS activism in the 1980s, quickly evolved to encompass how study participants are considered and treated in clinical research. Initially, people fearing death of AIDS sought early access to experimental medications that had not undergone rigorous testing in hopes of extending their lives. Thirty years on, scientists are asking a different set of ethical questions about clinical research, this time in the pursuit of either a sterilising cure or long-term remission for HIV. Instead of hastening access to experimental drugs for the sickest, researchers are now testing interventions for eradicating or controlling the virus in typically very healthy HIV-positive individuals who have the most to lose from such interventions if something goes wrong. While clinical researchers and ethicists debate the merits and limits of this type of research they should avoid discounting altruistic motivations as a powerful factor in a prospective study participants decisions to assume risks. My conversations with four men who participated in HIV cure studies confirmed the capacity of these people to make carefully considered decisions about risks and the sometimes substantial influence/sway of non-clinical benefits that may come from participation in cure-oriented research. Studies must undergo ethical and clinical review before proceeding, and not all participants of such studies will be able to weigh or understand risks and benefits as those profiled here. But respecting the self-agency of people living with HIV should be a goal in the design and conduct of cure research.

Brain death. Brain death is a recent invention.

Editor—Your explicit recognition that “brain death” is a recent invention for transplant purposes is most welcome and should do much to expose the fallacies and fudgings associated with this supposed new form of death, which have been hidden from public and professional view for far too long.1 As one of those described as campaigning tirelessly against the concept and the bad science underpinning its diagnosis, I am grateful for your journals support. I query your statement, however, that most doctors in Britain are comfortable with the concept of brain death. Is that statement evidence based? Or is it more likely that most doctors have no need to think deeply about this matter—and choose not to do so? n nThe review to which you refer notes the cultural emphasis of Margaret Locks study.2 More detailed consideration of the philosophical and scientific aspects will be found in the anthology by Potts et al, which was not available to Lock when she was writing.3 Since then, thanks to the excellent rapid response facility provided by bmj.com, the most significant development has been the wide dissemination of knowledge about the dangers of the apnoea test (which is a crucial element in the schedule of tests laid down by the Department of Health for the diagnosis of “brain stem death” or “death for transplant purposes”). Thanks, particularly, to the work of Coimbra, it is now clear that apnoea testing may exacerbate the brain damage and even prove lethal.4 That being so, and bearing in mind that the test can be of no possible therapeutic benefit to the patient so tested, its use is clearly unethical. n nHow long, therefore, now that this risk is generally known, can the Department of Health go on encouraging use of this damaging diagnostic procedure—which may have ensured the fulfilment of the allegedly invariably fatal prognosis attached to the diagnosis of “brain stem death” in at least some cases in the past?