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.

Read More

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.

Read More

abortion protest outside supreme court.

Reproductive Rights vs. Reproductive Justice: Why the Difference Matters in Bioethics

By Danielle M. Pacia

When conceptualizing the pursuit of reproductive freedom, we must acknowledge the ways that our systems and structures fail Black, Indigenous and people of color (BIPOC) populations.

2020 has been a year filled with anxiety and anger over the COVID-19 pandemic’s disproportionate negative effects on BIPOC populations. Black Lives Matter protests after the unjust deaths of Breonna Taylor, Mia Green, George Floyd, Rayshard Brooks, Riah Milton, and many others whose lives ended far too soon have prompted an overdue awakening. This has caused some to reexamine racism on a personal and institutional level. Like many disciplines in our country, the field of bioethics has begun to recognize how the field reinforces racism within its scholarship.

Part of this effort includes a critical examination of the frameworks we employ when analyzing bioethical subjects and events, and how they may exclude the historical contributions and narratives of BIPOC populations. Merely acknowledging racism is not enough.

Here, I will explain the differences in the terms reproductive justice and reproductive rights and advocate use of the reproductive justice framework instead of the reproductive rights framework. Within bioethics and health law policy, there is often a lack of clarity between the terms, which, in turn, leaves their important conceptual and historical differences ignored.

Read More

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.

Read More

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.

Read More

Up close shot of an orange prison jumpsuit

COVID-19 and Women in the US Criminal Legal System

By Cynthia Golembeski, Carolyn Sufrin, Brie Williams, Precious Bedell, Sherry Glied, Ingrid Binswanger, Donna Hylton, Tyler Winkelman, and Jaimie Meyer

Health and economic inequities exacerbated by the COVID-19 pandemic disproportionately harm women, and particularly women of color, involved in the criminal legal system.

Structural racism, sexism, poverty, substandard healthcare in jails and prisons, and the health effects of incarceration worsen women’s health. The pandemic only compounds these effects. Often overlooked or less visible, incarcerated women are at significantly increased risk of acquiring infectious illness, including COVID-19.

Alternatives to incarceration, and care continuity for chronic health conditions, including substance-use and psychiatric disorders, which disproportionately affect women, are necessary within the current pandemic and beyond.

Read More

(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.

Read More

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.

Read More

computer and stethoscope

How Telehealth Could Improve — or Worsen — Racial Disparities

By Craig Konnoth, JD, M.Phil., Wendy Netter Epstein, JD, and Max Helveston, JD

Despite upping the stakes of America’s partisan divide, the pandemic has prompted bipartisan support for at least one cause — the rapid rollout of telehealth, which allows people to see their doctors by videoconference or telephone.

In last week’s executive order, the Trump Administration reaffirmed its commitment to the use of telehealth. While telehealth may be, in many ways, a panacea for access to healthcare, particularly in COVID times, we should be concerned that patients of color may be left behind.

Read More

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.

Read More