Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast as a (...) conflict between parental autonomy and the child's future autonomy. (shrink)

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)

When cases are described thinly to protect patient confidentiality, they teach us only what we put into them. Thick description, like myth, allows a fuller moral response.

Obtaining community consent before conducting genetic research seems to be a way of ensuring that a whole community is not harmed against its wishes—that all Jews, or all African Americans, or all Hutterites are not forced to learn things about themselves they would rather not know, or are not forced into identities they would rather not have. Unfortunately, there are insurmountable problems both in identifying the right representatives of the community and in obtaining their consent.

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)

It is often pointed out that one cannot be “a little bit pregnant,” but pregnancy’s borders are no longer so crisp. At Children’s Hospital of Philadelphia, scientists have created an artificial womb in which “extremely premature” lambs were nurtured for four weeks, enough to make them ready to meet the world. The goal is to advance this technology until it is available for very premature human infants. At present, we put preemies into neonatal intensive care units, which are extremely stressful (...) for the babies and their families, and the things we do to try to support them often cause serious damage. If successful, the artificial womb could be a terrific technology. The implications are remarkable. Would humans become somewhat like marsupials? Now, one is either born or not. Would this technology create a new, intermediate stage? What would this mean ethically and legally? (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.

The risks and benefits of genetic research extend beyond individual subjects. Genetic research can also affect the communities to which the subjects belong, by rewriting the narratives and reconfiguring the identities that members of the community share and live by. These far‐ranging effects raise special concerns for obtaining informed consent, for which there is no simple solution.

This past July, five professional societies, whose members together provide the majority of clinical care in the United States, published a statement objecting to “inappropriate legislative interference” with the physician‐patient relationship and reiterated the importance of “putting patients’ best interests first.” Such a collective response is helpful, but given the apparently growing interest among legislators in legislating aspects of physician‐patient communications, individual physicians, too, may have to face this problem. What should a physician do when confronted with a law that (...) attempts to intervene in the doctor‐patient relationship in a way that the physician believes undercuts good medical care? (shrink)

: 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)

All of the 50 states of the United States have laws governing childhood vaccinations; 48 allow for religious exemptions, while 19 also offer exemptions based on some sort of personal philosophy. Recent disease outbreaks have caused these states to reconsider philosophical exemptions. However, we cannot, consistent with the U.S. Constitution, give preference to religion by creating religious exemptions only. The Constitution requires states to put religious and nonreligious claims on equal footing. Given the ubiquity of nonreligious objections to vaccination, I (...) conclude that the best response is to remove all exemptions, as two states have already done. But removing exemptions should not end our concern for children. Removing exemptions only bars children from public schools; it still leaves them unvaccinated, a danger to others, and reliant on whatever nonpublic schooling is available. If public school attendance is not enough of an incentive for vaccine reluctant parents, perhaps we should look into stronger measures. (shrink)

Tort law is an important tool in enforcing a minimal level of good behavior. But what is appropriate for law is not necessarily appropriate for ethics or for norms of professional practice.