Los Angeles, California, United States. June 23, 2021: #FreeBritney rally at LA Downtown Grand Park during a conservatorship hearing for Britney Spears.

There’s More to Decision-Making Capacity than Cognitive Function

The Health Law, Policy, Bioethics, and Biotechnology Workshop provides a forum for discussion of new scholarship in these fields from the world’s leading experts. Though the Workshop is typically open to the public, it is not currently, due to the COVID-19 pandemic. However, many of our presenters will contribute blog posts summarizing their work, which we are happy to share here on Bill of Health.

By James Toomey

The doctrine of capacity is a mess.

From Britney Spears’s high-profile struggles to establish her own capacity to the countless, quiet challenges of so many older adults, the doctrine of capacity, which requires people to have the cognitive functioning to understand the nature and consequences of a decision in order for it to be recognized in law, is vague, normatively and medically challenging, and inconsistently applied.

This is a big deal — at stake in every capacity case is whether, on the one hand, an individual may access the legal rights most of us take for granted, to enter into contracts, buy or transfer property, or get married or divorced; or, on the other, whether the legal system will ratify a decision the “real person” never would have made.

Read More

Close up of a mosquito sucking blood on human skin. This mosquito is a carrier of Malaria, Encephalitis, Dengue and Zika virus.

Responsibly Developing Gene Drives: The GeneConvene Global Collaborative

By James Toomey

Researchers believe that gene drives could eliminate vector-borne diseases such as malaria, by modifying mosquito species or eradicating those that carry disease, kill off invasive species, and combat the growing problem of pesticide resistance.

A gene drive is a technique for genetically modifying entire species of wild organisms. Genetically modified individuals of the species are released into the wild, so as to raise the probability that a particular gene will be passed onto the species’ progeny via reproduction.

Over the course of many generations, the gene — even if detrimental — can spread to an entire population.

But as of now, this is all hypothetical. No gene drive has been tested in the wild, and many people are skeptical that they should ever be used.

The GeneConvene Global Collaborative, a project of the Foundation for the National Institutes of Health, was started this past July to promote the responsible development and regulation of gene drive technologies. It brings together researchers, regulators and stakeholders around the world to develop best practices for gene drive research and implementation.

Because of my prior writing on this topic, I participated in GeneConvene’s fall webinar series and spoke with scientists there about the project. 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.

Read More

Abortion rights protest following the Supreme Court decision for Whole Women's Health in 2016

Book Review: Mary Ziegler’s ‘Abortion and the Law in America’

By James Toomey

If you want to understand America, you must understand our politics of abortion. And if you want to understand our politics of abortion, you must read Mary Ziegler’s recent legal history, “Abortion and the Law in America: Roe v. Wade to the Present” (2020).

In comprehensive detail and in a singularly fair and thoughtful way, Ziegler tells the story of American regulation of abortion from the Supreme Court’s historic Roe v. Wade decision to the present, and looks ahead to an uncertain future. Through vignettes of activists who have dedicated their lives to one side of the debate or the other, Ziegler shows that, notwithstanding the superficial constancy of the abortion debate — one side proclaiming the constitutional, essential rights of the fetus, the other the similarly irreducible right of bodily autonomy — the character of the debate, and the kinds of arguments made, have shifted over the course of the last fifty years.

Read More

Cartoon of contact tracing for COVID-19.

To Combat the COVID-19 Pandemic, the US Should Crowdsource Contact Tracing

By James Toomey

As states across the U.S. contemplate another lockdown to curb rising COVID-19 infections, it’s clear that we need to do something differently this time to ensure that our sacrifices are not wasted when we emerge.

To that end, we should try a crowdsourced, privately-run, anonymous, voluntary, and collaborative approach to contact tracing.

We’ve heard it countless times and in countless ways: the United States has failed at contact tracing. The technique, which has been effective at limiting transmission in many other countries, has plainly failed to contain the spread of the virus here.

Read More

Worn-down sign with a WHO sign that reads "Attention Ebola!"

Trump Can and Should Stop the Kivu Ebola Outbreak

The second-biggest outbreak of Ebola in history has been raging for eight months in eastern Congo. Notwithstanding the truly heroic efforts of the Congolese government, international aid agencies, and the Congo’s U.N. Peacekeeping force, it’s getting worse. As of April 16, 833 people have died.

Ebola is now appears to be a preventable disease. A vaccine completed at the tail end of 2014 West African outbreak has been highly effective where used, although experimental evidence is lacking. Read More

Close-up of a mosquito on human skin

Of Risk and Gene Drives

A few weeks ago, I attended a panel on gene editing at Harvard Medical School that covered some aspects of the science, ethics, and law of the practice. It was an interesting talk, in part because it largely covered the ethical issues of gene editing for human medicine and in other species as two sides of the same coin, rather than as fundamentally different conversations, as they are often treated.

Indeed, one member of the audience asked why there is so much focus on the safety and ethics of human gene editing, when the stakes, he argued, are much higher in the use of gene editing for environmental engineering. A botched human germline edit could harm a family; a botched gene drive could kill us all. It’s an interesting point. And because it suggests that we may want to be less than sanguine on the use of gene drives to eradicate malaria, on which I have previously been extremely sanguine, it is a point worth responding to. Read More

Image of a laptop showing a doctor holding a stethoscope. Telemedicine abstract.

How to Think About Prognosis by Telemedicine

Recently in these very pages, Evan Selinger and Arthur Caplan responded to an article in which Joel Zivot defended the use of telemedical technologies in informing patients and their families of dire news, in the context of the viral story of a doctor informing the family of Ernest Quintana of his imminent death via robotic video-link. Zivot argued that the use of technology to deliver such news is not the problem and what matters is the communicative skills of the physician. Selinger and Caplan respond that patients have basically different views on the propriety of using technology in these ways, and urge a regime of informed consent.

Selinger and Caplan are probably right on the short term policy question.

While we know there is a great deal of diversity in whether people think using telemedicine in this way is disrespectful, there is also no obvious answer among the alternatives. Warning people that this might happen and letting them opt-out, then, offers a short-term way to respect people’s preferences. And, as Selinger and Caplan acknowledge, that may be all that is needed. Over time, communication like this may become as anodyne as today it seems avant-garde. Read More

Image of a globe with a geometrical matrix shape surrounding it

No One Is Sovereign Over Genetic Sequences

Most of the time the sanctity of national sovereignty is invoked in international law, it’s covering for something bad. The debates about the interpretation of the Nagoya Protocol, a 2010 supplement to the Convention on Biological Diversity, are no exception.

A number of states party to the Protocol, a cryptic document designed to ensure the “fair and equitable sharing of benefits arising from the utilization of genetic resources,” enshrines a principle of state sovereignty over the genetic sequences of all life—including those of pathogens—within state territory.

This interpretation is not obvious on the face of the treaty. But neither is it foreclosed. The resolution of this question has profound implications for global public health: if the states that espouse this position are right, global genetic research will be impeded, possibly dramatically, and epidemics will be harder to fight. Read More

Close up of a mosquito sucking blood on human skin. This mosquito is a carrier of Malaria, Encephalitis, Dengue and Zika virus.

Malaria Eradication: For Africa as America

There is a page in the history books waiting to be written for the eradication of malaria. In recent years, malaria has killed more people globally than war—it’s killed predominately children, and predominately in sub-Saharan Africa. Despite being curable, and eliminated from most developed countries, malaria is the fifth deadliest infectious disease in the world.

A team of scientists in Italy is looking to write that history. Read More