Colorful lottery balls in a rotating bingo machine.

Equalizing the Genetic Lottery?

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

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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Close up view of graduation hat on dollar banknotes. Tuition fees concept.

Becoming a Bioethicist is Expensive. That’s a Problem.

By Leah Pierson

The financial barriers associated with becoming a bioethicist make the field less accessible, undermining the quality and relevance of bioethics research.

Because the boundaries of the field are poorly defined, credentials often serve as a gatekeeping mechanism. For instance, the recent creation of the Healthcare Ethics Consultant-Certified (HEC-C) program, which “identifies and assesses a national standard for the professional practice of clinical healthcare ethics consulting” is a good idea in theory. But the cost of the exam starts at $495. There is no fee assistance. Given that 99 percent of those who have taken the exam have passed, the exam seems to largely serve as a financial barrier to becoming an ethics consultant.

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People protesting with signs that say "healthcare is a human right" and "medicare for all."

Why We Need a Transformative Right-to-Health Pandemic Treaty Now

By Martín Hevia and Ximena Benavides

Acknowledging what went wrong during the COVID-19 pandemic is crucial to any pandemic lawmaking efforts. Chief among these concerns should be the centrality of human rights to global health security.

Health systems that lack universality and inclusivity will always fall short on disease surveillance, detection, and response during health emergencies, at the risk of not reaching all populations. The risk of exclusion exceeds national borders. Regional and global health governance favor the ‘competition of a few’ over (formal) solidarity, which explains why some of the small number of international collaborative initiatives aiming to reach the poorest countries during the pandemic are falling short.

Nonetheless, human rights remain at the periphery of the global health security conversation and the pandemic treaty debate.

Following the call of dozens of world leaders for a new treaty or another legally binding instrument to strengthen pandemic preparedness and response, the World Health Assembly will convene a special session in November 2021 to consider a new binding agreement that could address key failings in the COVID-19 response, including the insufficient international cooperation to implement the International Health Regulations’ (2005) public health capacities. Such an initiative should also serve as the long-awaited international policy-making window to address our health systems’ deep structural problems.

How can a pandemic treaty positively transform our health systems? In this contribution, we outline four core strategies.

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hospital equipment

The Import of the UNCRPD and Disability Justice for Pandemic Preparedness and Response

By Joel Michael Reynolds and Rosemarie Garland-Thomson

During the COVID-19 crisis, many nation-states did not consult or substantively take into consideration treaties protecting the rights of people with disabilities when developing their pandemic responses.

For example, the United Nations’ 2008 Convention on the Rights of Persons with Disabilities (UNCRPD) is an international human rights treaty intended to protect the rights and dignity of all persons with disabilities. It articulates principles of non-discrimination (see especially Articles 2, 3, and 5) and broader obligations upon specific parties, such as states parties, which are obligated to protect the rights and freedoms of people with disabilities (see Article 4, et al.).

The failures to uphold these principles and obligations during the COVID-19 pandemic were met with a swift response. The Office of the United Nations High Commissioner for Human Rights (OHCHR) produced guidelines on COVID-19 and the rights of persons with disabilities in April of 2020, as well as a policy brief in May of that year.

This commentary outlines three of the more important considerations for international pandemic lawmaking — both for specific instruments and wider deliberation — with respect to people with disabilities in general and the United Nations’ 2008 Convention on the Rights of Persons with Disabilities (UNCRPD) in particular.

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Lady Justice blindfolded with scales.

Health Justice Can’t Be Blind

By Daniel E. Dawes

“Justice is blind.” We have all heard this phrase before, and seen the iconic representation: the blindfolded Lady Justice.

That blindfold is supposed to symbolize impartiality. It represents our strict subscription to the notion that impartiality and objectivity are the principles upon which our system is built and by which it is protected. This notion that justice is blind is one rooted in equality.

But justice should not always be blind. Rather than prioritizing equal treatment, sometimes justice demands that we treat individuals differently to ensure equal outcomes. This notion of justice is rooted in the principle of equity.

Put simply, equity takes fairness as its aim. Where equality entails the equal (i.e., impartial) treatment of individuals, equity demands a nuanced approach to ensure equal outcomes.

To achieve justice in the realm of health, our focus must be on equity, and not on blind equality.

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Patient receives Covid-19 vaccine.

The Target of Health Justice

By Sridhar Venkatapuram 

As we amplify, further develop, and advise in the realizing of health justice, there would be much benefit in clarifying the basic units of moral concern.

This call for more specificity relates to both who is the primary unit of moral concern (individuals, communities, nation-states, etc.) as well as what it is that we care about in relation to them (i.e., liberties, resources including health care, basic needs, respect, opportunities, capabilities, relationships, etc.).

In the current context of the COVID-19 pandemic, where vaccines have become the preeminent goods of value worldwide, I focus my discussion here on how distributing vaccines equitably at the level of geographical units such as districts or nation-states may obfuscate or tolerate injustices, as well as provide suboptimal control of the pandemic.

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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.

How Adult Guardianship Law Fails to Protect Contraceptive Decision-Making Rights

By Kaitlynn Milvert

After Britney Spears testified this past summer about her struggle to have her intrauterine device (IUD) removed while under conservatorship, many commentators posed a simple, but critical question: Can conservators (or guardians) make contraceptive decisions for those under their care?

Attempting to answer that question reveals an area of state guardianship law where guardians’ authority is particularly murky and ill-defined. Reform is needed to address the restrictions on reproductive decision-making rights that adults under guardianship currently face.

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Group of Diverse Kids Playing in a Field Together.

Health Justice is Within Our Reach

By Dayna Bowen Matthew

Health justice is the outcome when law protects against the unequal distribution of the basic needs that all humanity requires to be healthy. Angela Harris and Aysha Pamukcu define health justice in terms of ending the subordination and discrimination that produce health disparities.

I first saw and experienced the need for the work to achieve health justice as a child. I grew up in the South Bronx, insulated from the absence of health justice until the fourth grade, when I began attending private school. Before then, I had no idea that the racially, ethnically, and economically segregated society in which I lived, played, and attended school and church was any different than the society that existed unbeknownst to me outside of my zip code.

I crossed interstate highway exchanges daily as I walked to P.S. 93, oblivious to the fact that other kids did not breathe the exhaust fumes and toxins from nearby waste transfer stations that tainted the air where my mostly Black, Dominican, and Puerto Rican neighbors lived. I had no idea that clean, breathable air was inequitably distributed in this country by race.

It was not until I left the South Bronx to attend school in Riverdale that I realized other families had an array of housing options to choose from that were different than mine. In fourth grade, when my family began voluntarily bussing me to private school, I learned that the housing available to families extended beyond the racially segregated shotgun row house I lived in, the stinky, dimly lit apartment buildings on my corner or “the projects” where my grandparents lived in Harlem. Who knew there were sprawling homes atop manicured lawns and opulent apartments overlooking Central Park available throughout other parts of the city? Who knew that even modestly priced apartments could be located near green spaces, well-stocked grocery markets, and schools that prepared kids well for college? Not me. I had no idea until I began to see that decent, clean, affordable housing, and resource-rich neighborhoods are inequitably distributed by race and ethnicity in America.

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UN United Nations general assembly building with world flags flying in front - First Avenue, New York City, NY, USA

Legal Capacity and Persons with Disabilities’ Struggle to Reclaim Control over Their Lives

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 Matthew S. Smith & Michael Ashley Stein

Persons with disabilities face an ongoing struggle to reclaim power and control over their lives.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is an important tool in this struggle.

In mental health care settings, the CRPD has challenged states and practitioners to reject coercive forms of care orchestrated by substitute decision-makers — be they clinicians, family members, or court appointees — in favor of modalities that preserve and privilege individuals’ direct control over their care.

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