doctor holding clipboard.

“Actionability” and the Ethics of Communicating Results to Study Participants

By Patrick Monette

To what end does a physician have a responsibility toward a research participant? Specifically, what data may be considered “actionable” for the physician to disclose to the patient, and when and how might this be done?

In the clinical setting, contemporary medical ethics address a physician’s “fiduciary responsibility.” That is, there is a well-established professional expectation that the physician will place the patient’s interests above their own and advocate for their welfare. This post focuses on an alternative dyad, that of physician and research participant, to explore how the field has broached the topic of actionability in the setting of clinical research. Read More

Senior citizen woman in wheelchair in a nursing home.

Seniors’ Perspectives on Dementia and Decision-Making

By James Toomey

In order to make a decision recognized in law — to enter into or enforce a contract, buy or sell property, or get married or divorced — an individual must have the mental capacity the law requires for the decision. As people, especially older adults, develop dementia, their decision-making abilities are increasingly compromised, and the law begins to find that they lack capacity for particular decisions.

The standards governing capacity determinations, however, are notorious for being vague, inconsistently applied, and excessively curtailing the rights of those with dementia. Part of the problem, I think, is the lack of an agreed-upon normative theory for when in the course of dementia the law ought to intervene in individual decision-making. That is why, here on Bill of Health, I’ve previously called for understanding the perspectives of seniors — the population affected by the doctrine of capacity most closely and most often — on this normative question.

In my recent publication “Understanding the Perspectives of Seniors on Dementia and Decision-Making” in AJOB Empirical Bioethics, I’ve begun to do so, reporting the results of an empirical study that I conducted with the Petrie-Flom Student Fellowship in the 2018-19 academic year. The study, which involved an online survey of and interviews with older adults, revealed a heterogeneity of ways of thinking about the problem, supporting a flexible legal doctrine that would assist people in making their own choices. Notwithstanding the diversity, however, the data reveal several conclusions and tensions of interest to academics and healthcare and legal practitioners.

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Terminally ill teen won historic court ruling to preserve her body after death

By John Tingle

The British media have been reporting and discussing widely the case of JS v M and F (Cryonic case), 10th November 2016 in the High Court of Justice, Family Division, [2016] EWHC 2859 (Fam). The case is the first in the UK and probably the world to deal with the issue of cryonics and a 14-year-old girls dying wish for her body to be preserved after her death with the hope that at some time in the future she will be brought back to life after a cure for her illness is found.

Truth is stranger than fiction and this case raises some fundamental legal and ethical issues which will occupy future courts and the legislature for some time to come. I could not imagine a more novel and difficult medical law case.

The facts

JS had a rare form of cancer and her active treatment came to an end in August when she started to receive palliative care. Over recent months she has used the internet to investigate cryonics: the freezing of a dead body in the hope that there may be a cure for the illness that she had and will be brought back to life at some future time. Mr Justice Peter Jackson heard the case and stated in his judgement that the scientific theory underlying cryonics is speculative and controversial and that there is considerable debate about its ethical implications. Since the first cryonic preservation in the 1960s,the process has been performed on very few individuals, numbering in the low hundreds. There are two commercial organisations in the United States and one in Russia for this form of preservation.She is one of only 10 Britons and the only British child to have been frozen by Cryonics UK , a non-profit organization. Her body was transported to the USA and is being stored in a vat of liquid nitrogen by the Cyronics Institute in Michigan. Read More

“Marlise’s Law”: Protecting the Autonomy and Dignity of Brain-Dead Pregnant Women

Allison M. Whelan, J.D.
Senior Fellow, Center for Biotechnology & Global Health Policy, University of California, Irvine School of Law
Guest Blogger

On March 12, 2015, Texas Representative Elliot Naishtat (Austin) filed HB 3183, which would repeal the Texas law that currently prohibits pregnant women from exercising their advance directives.  The existing statute includes the following language:  “I understand that under Texas law this directive has no effect if I have been diagnosed as pregnant.” The bill strikes this sentence and would allow health care providers and medical institutions to honor a woman’s wishes about end-of-life care.

The bill is known as “Marlise’s Law,” named for Marlise Muñoz of Fort Worth, Texas, who was kept on mechanical support for two months after she was declared brain dead in 2013. Muñoz collapsed in her home in November 2013 when she was 14 weeks pregnant. She was declared brain dead two days later but John Peter Smith Hospital said it was legally prevented from removing life support because she was pregnant. Read More

Egg Freezing and Women’s Decision Making

By David Orentlicher
[Cross-posted at Health Law Profs and PrawfsBlawg.]

The announcement by Apple and Facebook that they will cover the costs of egg freezing predictably provoked some controversy—predictably because it involves reproduction and also because too many people do not trust women to make reproductive decisions.

Interestingly, the challenge to women’s autonomy can come from both sides of the political spectrum, as has happened with several assisted reproductive technologies. Scholars on the left criticized surrogate motherhood on the ground that surrogates were exploited by the couple intending to raise the child, and other new reproductive technologies are criticized on the grounds that women will feel obligated to use them rather than free to use them. Indeed, this concern about coercion drives some of the objections to egg freezing.  Read More