There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)
As we aggressively pursue research to cure and prevent Alzheimer’s disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects’ death; the creation of cohorts of ’study (...) ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants’ welfare if the information is obtained by insurance companies or long-term care providers; the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. (shrink)
The ancient practice of metzitzah b'peh, direct oral suction, is still practiced by ultra-Orthodox Jews as part of the religious rite of male newborn circumcision. Between 2000 and 2011, 11 children have died in New York and New Jersey, following infection by herpes simplex virus, presumably from infected practitioners. The City responded by requiring signed parental consent before oral suction, with parents being warned of the dangers of the practice. This essay argues that informed consent is not an appropriate response (...) to this problem. An outright ban would a better response to a practice that is dangerous to children, but might prove unconstitutional under New York State law. (shrink)
: Because I reject the notion that physical characteristics constitute cultural membership, I argue that, even if the claim were persuasive that deafness is a culture rather than a disability, there is no reason to fault hearing parents who choose cochlear implants for their deaf children.
Advances in genetic research and technology can have a profound impact on identity and family dynamics when genetic findings disrupt deeply held assumptions about the nuclear family. Ancestry tracing and paternity testing present parallel risks and opportunities. As these latter uses are now available over the internet directly to the consumer, bypassing the genetic counselor, consumers need adequate warning when making use of these new modalities.
: It is possible and necessary to compare stretches of human life with other goods, such as the good of conserving resources for others. A minute of human life is not of infinite value; all else being equal, a minute of life is less valuable than 10 years of the same life. Nevertheless, this ability to evaluate human life does not necessarily lead to total commodification of human life.
This paper probes the implications of a genetic basis for sexual orientation for traditional branches of Judaism, which are struggling with how accepting to be of noncelibate gays and lesbians in their communities. The paper looks at the current attitudes toward homosexuality across the different branches of Judaism; social and cultural factors that work against acceptance; attitudes toward science in Jewish culture; and the likelihood that scientific evidence that sexual orientation is at least partly genetically determined will influence Jewish scholars' (...) and leaders' thinking on this issue. (shrink)
There is strong sentiment for a policy which would exclude foreigners from access to organs from American cadaver donors. One common argument is that foreigners are free riders; since they are not members of the community whichgives organs, it would be unfair to allow them toreceive such a scarce resource.This essay examines the philosophical basis for the free rider argument, and compares that with the empirical data about organ donation in the U.S. The free rider argument ought not to be (...) used to exclude foreign nationals because it is based on fallacious assumptions about group membership, and how the giving community is defined. Polls show that even among the seventy-five per cent of Americans who support organ donation, only seventeen per cent had taken the small step of filling out donor cards. Therefore, it goes against logic to define the giving community as coextensive with American residency, while excluding foreigners who might well have become donors had they lived in countries which provided that option. (shrink)