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)

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.

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.

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)

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.

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 11.3 (2001) 219-220 [Access article in PDF] Introduction In the last couple of decades,commodification has become almost a buzz-word in bioethics. As we become technically more adept at detaching elements of human bodies and making use of them for others, it seems as if more and more things-from motherhood to gametes to kidneys to our very DNA-can be borrowed, rented, bought, and sold. Other (...) technology allows us unprecedented influence over the characteristics of our offspring (unprecedented, that is, if we ignore the many cultures in which children were and are routinely discarded because they are the wrong sex, disabled, or the product of multiple births). It is common, for example, for writers to worry that the availability of pre-implantation genetic diagnosis will seduce parents into thinking of their children as commodities, to be ordered in much the same way as automobiles, with the inevitable concomitant that they will want to "return" children who do not measure up to their specifications.Unfortunately, a great deal of the talk about "commodification" has been clumsy and sloppy. The term has been used as a magic bullet, as if saying "But that's commodification!" is the same as having made an argument. In fact, commodification of human persons, human bodies, human labor, human relationships, is a complex matter. In many human dealings, commodified and noncommodified understandings of the same thing, or the same transaction, exist more or less comfortably together. Most Westerners condemn commercial sex, for example, while at the same time knowing that in most times and places in the world, marriage was and is thought of as primarily an economic relationship. The common use of "cheap" in post-World War II American slang to describe a teenage woman who is more sexually available than her peers perfectly captures the market rhetoric inherent in respectable American sexual mores.Given this complexity, it is not surprising that many writers in bioethics have gravitated to the work of Margaret Jane Radin. In her two books, Contested Commodities (Harvard University Press, 1996) and Reinterpreting Property (University of Chicago Press, 1993), and many articles, [End Page 219] Radin has taken on the problem of commodification without falling into either sentimentality or cynicism. She is a careful thinker and a careful (and demanding!) writer. We have long valued her work as we have sought to grapple with the many ways in which the problem of commodification arises in bioethics. In this issue of the Kennedy Institute of Ethics Journal, entitled "Who's Afraid of Commodification?," we have asked three colleagues to join us in reflecting on aspects of the problem of commodification in bioethics. We are especially delighted that Radin agreed to respond to our efforts in this direction.Lisa Sowle Cahill takes the discussion of commodification to a new level, as she focuses on global ethics, especially genetic research and the marketing and accessibility of pharmaceuticals. Dena S. Davis explores the debates over refusal of treatment and rational suicide and concludes that to put a value on particular pieces of one's lifespan does not necessarily lead to negative aspects of commodification. Ronald M. Green analyzes Radin's use of Kant. Suzanne Holland addresses commodification of body parts, from gametes to cadaveric tissue, and concludes with some specific recommendations. Thomas A. Shannon takes a fresh look at the problem of whether we should allow the sale of organs; he shares with Holland a special concern for the rhetoric of commodification. Finally, Margaret Jane Radin responds to the preceding essays, asking four "stubbornly difficult" questions, questions that show that the debate about commodification is only just begun. Dena S. Davis and Suzanne Holland... (shrink)

When the benefits of surgery do not outweigh the harms or where they do not clearly do so, surgical interventions become morally contested. Cutting to the Core examines a number of such surgeries, including infant male circumcision and cutting the genitals of female children, the separation of conjoined twins, surgical sex assignment of intersex children and the surgical re-assignment of transsexuals, limb and face transplantation, cosmetic surgery, and placebo surgery.

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)

Many healthy older people are very afraid of becoming demented as they age. As people who currently value autonomy, dignity and independence, they presumably would wish to use some form of advance...

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.

In some sense, and perhaps this is the hallmark of the modern era, all families cope with competing identities. Children may choose high‐demand careers, such as the priesthood or the military, that may well make them seem like strangers to their parents, speaking almost a different language and embracing values and loyalties unknown at home. Grown children can convert to alien religions and live halfway across the world. Children of immigrants assimilate and may not even have a language in common (...) with their grandparents. But in his book Far from the Tree, Solomon focuses on identities that are inborn, although not necessary genetic, so that, while the child is still “in the nest,” he or she is already somehow a changeling. As the title has it, sometimes the apple does fall “far from the tree.”. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 59-60, January/February 2022.

The creation of embryos for research use has drawn a great deal of criticism. It is difficult to defend an ethical distinction between what one can do to "spare" embryos and what one can do to "research" embryos. The strongest ground on which to argue against the creation of embryos for research is a symbolic one, having to do with respect for human life. Ronald Dworkin's work in Life's Dominion on the symbolic meaning of the abortion debate throws a helpful (...) light on this dispute. By understanding the basic question to be, Does the creation of research embryos weaken or insult our communal respect for the sanctity of human life in some way that in vitro fertilization (IVF) or the experimental use of "spare" embryos does not?, the debate can move in a more constructive direction. (shrink)