B'rit shalom: a Jewish ritual alternative to newborn male circumcision.

This paper focuses on the ritual b'rit shalom (also brit shalom), Hebrew for "covenant of peace," which is intentionally positioned as an alternative to b'rit milah, the covenant of circumcision, for infant males. Although b'rit shalom is currently not common in the Jewish community, it might well become more popular. The first section discusses some of the history and practices of b'rit milah, so that the second section can better show the development and potential of b'rit shalom. Since many Americans, including Jews, no longer view circumcision as a cultural necessity, and there is long-running ethical debate about infant male genital cutting, there is reason to explore Jewish infant rituals which do not include circumcision.

Death in a Cold Climate: Medical Aid in Dying in Vermont.

What happened when Vermont passed its medical-aid-in-dying bill in 2013? Not what one might hope or expect. In Scripting Death: Stories of Assisted Dying in America (University of California Press, 2021), Mara Buchbinder details, through a host of gripping interviews, the difficulties people experience in actually accessing their legal rights to physician-assisted suicide.

Living with Alzheimer Disease and Other Types of Dementia: Stories from Caregivers.

This symposium includes twelve personal narratives from people who have provided care to a spouse, parent, another relative, or friend with Alzheimer disease or related dementias (ADRD). People with ADRDs often face years of cognitive decline with memory and thinking that eventually require help from others to assist with their daily activities. Most people caring for older adults in the US are unpaid family members, friends, or other informal caregivers. People providing care often experience emotional and physical stress, or financial burdens. This symposium also includes three commentaries by experts in the fields of bioethics and philosophy, justice in healthcare, family caregiving, and end of life choices. These narratives provide a forum for exploring caregiver needs, suffering, benefits, and joys, as well as opportunities to improve the way we support caregivers and people with dementia and Alzheimer disease.

Could We Be Marsupials? Very Premature Babies and Artificial Wombs.

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?

Vaccine Exemptions and the Church-State Problem.

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.

Ethical issues in Alzheimer's disease research involving human subjects.

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 (1) the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects' death; (2) 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; (3) reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; (4) 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; (5) 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.

Ethical Controversy About Hysterectomy for a Minor.

One of the most complicated ethical issues that arises in children's hospitals today is the issue of whether it is ever permissible to perform a procedure for a minor that will result in permanent sterilization. In most cases, the answer is no. The availability of good, safe, long-acting contraception allows surgical options to be postponed when the primary goal of such surgical options is to prevent pregnancy. But what if a minor has congenital urogenital anomalies or other medical conditions for which the best treatment is a hysterectomy? In those cases, the primary goal of therapy is not to prevent pregnancy. Instead, sterility is an unfortunate side effect of a medically indicated treatment. Should that side effect preclude the provision of a therapy that is otherwise medically appropriate? We present a case that raises these issues, and asked experts in law, bioethics, community advocacy, and gynecology to respond. They discuss whether the best option is to proceed with the surgery or to cautiously delay making a decision to give the teenager more time to carefully consider all of the options.

Narrative Symposium: Patient and Research Participant experiences with Genetic Testing.

Twelve personal narratives address the challenges, benefits, and pitfalls of genetic testing. Three commentary articles explore these stories and suggest lessons that can be learned from them. The commentators come from backgrounds that include bioethics, public health, psychology, and philosophy.

Alzheimer disease and pre-emptive suicide.

There is a flood of papers being published on new ways to diagnose Alzheimer disease (AD) before it is symptomatic, involving a combination of invasive tests (eg, spinal tap), 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 (REVEAL) 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.

Opportunistic testing: the death of informed consent?

This Article focuses on one aspect of prenatal diagnosis: noninvasive prenatal diagnosis, particularly the detection of Trisomy 21 (Down Syndrome) through a simple test of maternal blood. Although I discuss issues salient to this particular test, I place it in the context of "opportunistic" testing generally. It is my view that opportunistic testing presents the most serious challenge to patient autonomy we are facing in the twenty-first century. In this Article, I will explain what I mean by opportunistic testing and consider three different examples of how it threatens informed consent: (1) Prostate-Specific Antigen (PSA) screening, (2) newborn screening, and (3) prenatal diagnosis of maternal blood tests for fetal anomalies.

Ancient rites and new laws: how should we regulate religious circumcision of minors?

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.