Society or population, social diversity. Flat cartoon vector illustration.

Unequal Representation: Race, Sex, and Trust in Medicine — COVID-19 and Beyond

By Allison M. Whelan*

The COVID-19 pandemic has given renewed importance and urgency to the need for racial and gender diversity in clinical trials.

The underrepresentation of women in clinical research throughout history is a well-recognized problem, particularly for pregnant women. This stems, in part, from paternalism, a lack of respect for women’s autonomy, and concerns about women’s “vulnerability.” It harms women’s health as well as their dignity.

Over the years, FDA rules and guidance have helped narrow these gaps, and recent data suggest that women’s enrollment in clinical trials that were used to support new drug approvals was equal to or greater than men’s enrollment. Nevertheless, there is still progress to be made, especially for pregnant women. In the context of COVID-19 research, one review of 371 interventional trials found that 75.8% of drug trials declared pregnancy as an exclusion criteria, a concerning statistic given that recent data suggest that contracting COVID-19 during pregnancy may increase the risk of preterm birth.

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Miami Downtown, FL, USA - MAY 31, 2020: Woman leading a group of demonstrators on road protesting for human rights and against racism.

Understanding the Role of Race in Health: Conclusions from the Symposium

By Craig Konnoth

In my introductory post to this symposium, I suggested that medicine and health tapped into a discourse of power that had the power to either harm or help. Medicine can trigger benefits in the law — what I call “medical civil rights,” where advocates rely on medicine’s language to trigger both formal legal rights and public advantage. At the same time, I acknowledged that black, indigenous, and people of color (BIPOC), are often left behind.

In a midpoint reflection, I theorized the problem through the lens of a double bind. On one hand, medicine erases the needs of BIPOC and the harms they experience — the health harms experienced by frontline medical workers, or caused by school and residential segregation — so that they cannot access medical civil rights. On the other hand, BIPOC are rendered hypervisible in contexts where medicine continues to oppress. They are used in clinical trials and tarred with xenophobia and narratives of genetic difference. What should be done?

Several authors offer solutions. I separate them into three categories: (1) community reform, (2) social and legal reform, and (3) medical reform. Of course, all of these solutions are interrelated. Legal and policy change drives medicine; medical research drives law, society, and policy — and both are driven through community activism and consciousness.

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Close-up of a stethoscope on an American flag

Why Justice is Good for America’s Health

By Dayna Bowen Matthew

Justice is good for health [and] . . . health is the byproduct of justice.

— Norman Daniels, Bruce Kennedy & Ichiro Kawachi (Boston Review, 2000)

Among the most salient lessons to be learned from the coronavirus pandemic are that unjust laws produce unjust health outcomes, and that justice is just plain good for America’s health.

Health justice is the moral mandate to protect and advance an equal opportunity for all to enjoy greatest health and well-being possible. Health justice means that no one person or group of people are granted or excluded from the means of pursuing health on an inequitable basis. To achieve health justice, societal institutions such as governments and health care providers must act to advance equality, by increasing fairness and decreasing unfairness of their current and historic impacts on populations.

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Protestor holding sign that reads: "we need reform now."

Using Anti-Racist Policy to Promote the Good Governance of Necessities

By Aysha Pamukcu and Angela P. Harris

Multiple crises creating a “wet cement” moment

In the U.S., racism has repeatedly stymied progress toward the good governance of necessities. Anti-racism, therefore, must be at the core of solutions to our present crises.

One of the most powerful applications of anti-racism is through policy. By enacting and enforcing anti-racist policy, we can govern more of life’s necessities as public goods.

Achieving this requires a robust coalition of advocates who are organized, interdisciplinary, and prepared to promote the equitable governance of vital goods. The “civil rights of health” — a partnership of civil rights, public health, and social justice advocates — can help provide the change infrastructure needed for this paradigm shift.

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(Institute for the feeble-minded, Lincoln, Ill. / Library of Congress)

Why Buck v. Bell Still Matters

By Jasmine E. Harris

In 1927, Buck v. Bell upheld Virginia’s Eugenical Sterilization Act, authorizing the state of Virginia to forcibly sterilize Carrie Buck, a young, poor white woman the state determined to be unfit to procreate.

In less than 1,000 words, Justice Oliver Wendell Holmes, writing for all but one of the Justices of the Court, breathed new life into an otherwise fading public eugenics movement.

More than 70,000 people (predominantly women of color) were forcibly sterilized in the twentieth century.

Buck is most often cited for its shock value and repeatedly, for what is, perhaps, its most famous six words: “Three generations of imbeciles are enough.” While this may be the most provocative language in the opinion, it is not the most noteworthy.

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an ambulance parked at the entrance of an emergency department

The Double Bind of Medicine for Racial Minorities

By Craig Konnoth

Medicine often falls short of helping black, indigenous, and people of color (BIPOC). While many individuals successfully invoke medical framing to offer some assistance to address the serious burdens they face — as I explain in a recent article — such efforts have fallen short in the context of racial justice. BIPOC are either subject to hypervisibility — where their medical trait is made a defining characteristic of their existence — or medical erasure, where their medical needs are left unaddressed and ignored.

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Minneapolis, MN / USA - May 26 2020: Black Lives Matter, "I Can't Breathe" Protest for George Floyd.

Expendable Lives and COVID-19

By Matiangai Sirleaf

Two French doctors recently appeared on television and discussed using African subjects in experimental trials for an antidote to the novel coronavirus (COVID-19).

“Shouldn’t we do this study in Africa, where there are no masks, no treatment, no resuscitation, a bit like some studies on AIDS, where among prostitutes, we try things, because they are exposed, and they don’t protect themselves. What do you think?” asked Jean-Paul Mira, head of the intensive care unit at the Cochin Hospital in Paris on April 1, 2020.

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lady justice.

When Health Advice Is Hard to Come by, BIPOC Suffer the Consequences

By Claudia E. Haupt

The COVID-19 pandemic has highlighted the tradeoffs at stake for Black, Indigenous, and people of color (BIPOC) seeking reliable health advice.

While there are legal safeguards to ensure reliable health advice within the confines of the doctor-patient relationship, outside of that relationship, the First Amendment protects bad advice just as much as good advice.

Courts continue to interpret the First Amendment in an expanding, deregulatory manner and the health context is no exception. For example, one novel judicial interpretation challenges previously accepted applications of the police power in furthering public health. In a forthcoming article, “Public Health Originalism and the First Amendment,” my colleague Wendy Parmet and I explore some of the dangers associated with this deregulatory approach.

Overall, the beneficiaries of these recent developments tend to be powerful speakers. The costs have largely fallen on women, as seen for example in NIFLA v. Becerra, and those who lack access to reliable medical advice, who are disproportionately BIPOC. Current First Amendment doctrine thus has the dangerous potential to further exacerbate existing racial disparities in health.

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Syringe and vials of vaccine.

Racial Inclusivity in COVID-19 Vaccine Trials

By Colleen Campbell

Recent calls for racial inclusivity in vaccine trials, which often rely on genetic rationales while emphasizing medical distrust among African Americans, unfortunately lack an equally robust critique of medical racism and the ongoing reasons for this distrust.

Even though race lacks genetic meaning, the COVID-19 discourse is rife with biological notions of race. Because of [g]enetics related to racial differences” African Americans must be involved in clinical trials, said Dr. Larry Graham in an NBC News article. He continued: “We must be sure it works in Black folks.” For this reason, companies like biotech firm Moderna are enlisting Black religious leaders to heavily recruit African American participants. They are also exploiting networks previously used for HIV clinical trials.

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New York City, New York / USA - June 13 2020 New York City healthcare workers during coronavirus outbreak in America.

COVID-19 and the ‘Essential’ Yet Underappreciated Front-Line Health Care Worker 

By Kimani Paul-Emile

When considering those on the front lines of the coronavirus pandemic response, most people likely envision doctors and nurses. However, there is an often forgotten, front-line workforce comprised of orderlies, nursing facility workers, and nursing assistants (“NAs”) that earns very little money, has few protections, and is largely Black and Brown and female. Many individuals in this group are also subject to a unique form of discrimination: rejection on the basis of their race or ethnicity by some of the very patients they are assigned to aid.

The millions of people who make up this group of essential workers constitute a substantial portion of the health care workforce and earn an average of $13.48 per hour despite the risks they take. Their work, which involves bathing, dressing, and feeding patients; brushing their teeth, and assisting with their use of the toilet, puts these workers at high risk of contracting COVID-19. Nevertheless, early in the pandemic, many of these workers lacked or had inadequate personal protective gear due to the tiered system used for distributing this equipment. Doctors and nurses were first in line for smocks, masks, and other essential gear; last were members of this underappreciated group of front-line health care workers.

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