Category: James Toomey

Pace Law Review Symposium Edition: “Bioethics After Dobbs”

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by James Toomey

On June 24, 2022, the Supreme Court decided Dobbs v. Jackson Women’s Health Organization, overturning the canonical precedent Roe v. Wade and holding that the federal constitution does not protect the right to an abortion. Dobbs has once again thrust abortion to the center of the national political conversation, as states around the country move to ban, restrict, or shield abortion access, while activists on both sides aspire towards a national approach one way or the other. At the same time, lawyers, scholars, advocates, and activists are exploring the implications of Dobbs in a variety of areas—from assisted reproductive technology (ART) to other rights grounded in substantive due process.

Bioethics — the branch of applied ethics focused on ethical questions in biology and medicine — is uniquely situated to offer insights on many of the questions raised in the wake of Dobbs. It is, after all, a field that has long debated questions of the relationship between physicians and patients, the nature of personhood, and the relationship between autonomy and health care.

On April 5, 2024, the Pace Law Review hosted a symposium on “Bioethics After Dobbs” at the Elisabeth Haub School of Law in White Plains, NY. The papers from that symposium have been published in a special edition of the Pace Law Review and are freely available to the public.

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Love and Liberalism in Surrogate Decision-Making

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by James Toomey

If you are supposed to make a legally binding decision on behalf of someone incapacitated by dementia, chances are the law will tell you to apply the “substituted judgment” standard—you will be asked to make the decision the person for whom you are deciding would have made, if they had capacity. But why? You might think that the decision they would have made is a very bad one. And it’s not as though someone in the late stages of dementia is coming back to appreciate what you’ve done for them. Indeed, according to many philosophers (and ordinary people), someone in the late stages of dementia might not even be the same person they had been previously — why decide based on what some now-gone person would have wanted?

In Love, Liberalism, Substituted Judgment, recently published in the Indiana Law Journal, I offer a novel account of why the law might be justified in endorsing the substituted judgment standard in dementia cases, notwithstanding these sorts of difficulties. The argument proceeds in three steps. First, I suggest that dementia cases might not be the right place to start. In cases of temporary incapacity, such as that caused by a transient psychotic episode, questions about whether decisions made in the interim are really for the person don’t arise — that person will come back, and their life will be affected one way or another by what happened in the interim. The substituted judgment standard applies in these cases too, and, indeed, that is where it historically arose. Read More

Capacity and Medical Decision-Making in First- and Third-Person Perspectives

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by James Toomey

Imagine that you were to develop dementia and someone else had to make medical decisions on your behalf. How would you want them to decide? Then suppose that you had to make medical decisions on behalf of another person with dementia. Would you think about decision-making in the same way? A new study in AJOB Empirical Bioethics by myself, Jonathan Lewis, Ivar Hannikainen, and Brian Earp suggests that people may favor different decisions when deciding for others versus when deciding what they would want for themselves.

In the study, we presented a cohort of nearly 1,500 U.S. participants with a vignette based on one of the most persistent and difficult questions in bioethics. The vignette describes someone with ordinary, lifelong cognitive functioning considering the possibility that in the future they might develop dementia and need to make a significant medical decision. But many years later, after they have undergone cognitive decline sufficient to lose legal capacity, the very circumstances they had contemplated occur and they make the opposite decision.

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Abstract glitch with word SCAM on 100 Dollar bill. Concept art for Online scam.

Rethinking Senior Scams?

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By James Toomey

Many people, including, it seems, most advocates for law reform, assume that older adults are uniquely vulnerable to scams, and indeed that senior scams are a unique social problem demanding a unique legal solution. But in “The Age of Fraud” (forthcoming in the Harvard Journal on Legislation, winter 2023), about which I’ve blogged here before, I reported the results of an empirical study suggesting that, in fact, younger adults were as much as three times more likely to engage with scammers during the first year of the COVID pandemic than older adults.

One possible implication of this finding — if indeed it is generalizable — which I discuss but don’t commit to in the paper, is that more people are more vulnerable to scams — and the polished tactics of psychological manipulation used by scammers — than has been generally appreciated. But if scams are not a bounded problem of those who are in some sense more psychologically vulnerable (as older adults are thought of in, at least, the popular imagination), we might want to rethink scams — what they are, how we fight them, and how we treat and think about their victims.

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Cell culture.

A New Theory for Gene Ownership

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By James Toomey

The story of Henrietta Lacks is surely among the most famous in the history of bioethics, and its facts are well-known. Ms. Lacks sought treatment for cervical cancer. After conducting a biopsy on her tumor, her doctors learned that her cancer cells reproduced uniquely effectively. Without her knowledge or consent, her doctors derived from the cells the HeLa cell line — the world’s first immortal human cell line, worth billions and a driver of the biotechnology revolution. Lacks died in poverty.

No doubt her doctors’ behavior was not consistent with today’s standards of informed consent. But another question has remained more persistently challenging — did the doctors steal something from Lacks? Did she own the cells of her tumor? Or, perhaps more precisely, because few argue that HeLa is really the same thing as Lacks’s tumor cells, did she own the genetic information contained in her tumor?

In a new paper, Property’s Boundaries (forthcoming in the Virginia Law Review, March 2023), I develop a theory of what can and cannot be owned to answer these kinds of questions — pervasive in bioethics, from debates about ownership of organs to embryos. My conclusion, in short, is that because the essence of the idea of ownership is a relationship of absolute control, anything that can be the subject of human control can, in principle, be owned. But that which we cannot control we cannot own. From this perspective, Henrietta Lacks owned the cells of her tumor, and the tumor itself. But the genetic information within them — facts about the universe subject to no human control — simply cannot be owned, by her or anyone else.

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Colorful lottery balls in a rotating bingo machine.

Equalizing the Genetic Lottery?

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By James Toomey

Kathryn Paige Harden’s The Genetic Lottery: Why DNA Matters for Social Equality is a thoughtful, thorough, and well-written book about the compatibility of behavioral genetics with progressive ideology. Weaving together her own fascinating work in genetics with Rawlsian political philosophy, Harden’s book is necessary reading for anyone interested in inheritance or politics — which, I suppose, is everyone.

The basic argument of the book is that the so-called First Law of Behavioral Genetics is correct — everything is heritable. Harden supports this claim with a wealth of research in genetics over the past few decades, with an emphasis on her own contributions (“within a group of children who are all in school, nearly all of the differences in general [executive function] are estimated to be due to the genetic differences between them”). More importantly, Harden does not think this fact has the implications for normative politics that many, particularly on the left, worry it does. The fact that some genetic profiles cause higher general intelligence — or anything else — does not mean those who have them are better or more deserving of society’s bounty and social prestige. We can, and should, adopt “anti-eugenic” policies designed to make better as much as possible the lives of the genetically “unluckiest.”

Accepting Harden’s descriptive premises, I find her political theory basically right. But the book elides a crucial distinction in left-leaning political thought that, I think, misses something about why so many on the left find the prospect of the heritability of mental characteristics so troubling, and which perhaps diminishes the book’s ability to persuade its target audience (which, frankly, is not me, having been already convinced on much of this by The Blank Slate).

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Call from unknown number on iPhone.

The Surprising Shape of COVID Fraud

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By James Toomey

When the world went into lockdown in March 2020, many commentators noticed that social isolation could offer scammers an unprecedented opportunity to take advantage of people’s fear and loneliness. But they didn’t anticipate that fraud would generally affect a range of age groups. Indeed, much like the virus itself, the risks of frauds and scams related to the COVID pandemic were thought primarily to affect older adults.

This assumption seems to have been wrong. Recently, I conducted a study on the prevalence of scam-victimization during the pandemic across age groups. Specifically, I recruited two populations — one of adults between 25 and 35 and one of adults over than 65—and asked whether they had been contacted by people making specific fraudulent promises during the pandemic, and whether they’d engaged with the scammer by giving personal information, sending money, or clicking a link. In the study populations, the younger group engaged with scammers three times more frequently than the older group — a disparity that was statistically significant and persisted regardless of how I sliced the data.

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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

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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.

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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

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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