As the healthcare industry takes steps to address racial disparities, ethicists have an opportunity to play an important role.
“Hospitals and health systems need to recognize that it’s not enough to simply avoid actions that are affirmatively biased against minority groups. What’s needed is affirmative efforts to overcome a deeply ingrained history of exclusion,” says Carl Coleman, JD, professor of law at Seton Hall in Newark, NJ. “Ethicists should identify the lack of attention to these issues as an ethical problem and ensure that it is taken seriously by institutional decision-makers.”
Ethicists need support from hospital leadership to call out racial disparities when they occur, says Michael Shapiro, MD, chair of the bioethics consultation committee and associate professor of surgery at Rutgers in Newark, NJ. “Ethics committees need representation from disparate racial/ethnic/gender/social groups so those different perspectives are recognized,” Shapiro says.
Ethics grand rounds should address disparities specifically, according to Shapiro. Issues of capacity, pain management, availability of translators, and informed consent may be handled differently for people of color.
“There is also a long history assuming that African American patients have different values than other patients, without taking the time to explore the question directly. Ethicists can be directly involved in such questions,” Shapiro offers.
Shapiro says any committee considering questions of equity would benefit from ethics input. This might include the credentials committee advocating for a medical staff that looks like the surrounding community. Perhaps the pharmacy and therapeutics (P&T) committee is considering adding an expensive drug to the formulary.
“I have sat on P&T committees where very expensive cancer drugs were only available for outpatient use, and only those patients who could afford to buy them had access,” Shapiro recalls. To address racial disparities at their own institutions, ethicists need to educate themselves on implicit and explicit bias, says Laurie Zephyrin, MD, MPH, MBA, vice president of delivery system reform at The Commonwealth Fund in New York City. Making use of all the available evidence also is critical.
“If you are able to look at data on outcomes and aggregate that by race and ethnicity, that can be very helpful in understanding if there are disparities and determining structural causes of these disparities,” Zephyrin explains.
During consults, ethicists can explore whether inequitable care could have played a role in poor outcomes. “Quality and safety and equity go together,” Zephyrin observes.
In the research setting, inadequate inclusion of racial minorities is a long-standing concern. “Most clinical studies today still do not come close to reflecting the diversity of the American population,” Coleman laments.
One study of cancer clinical trials revealed that of the trials that reported participants’ race, only 3% of participants were Black, and only 6% were Hispanic.1 “The underrepresentation of racial minorities in clinical trials is dangerous,” Coleman cautions.
Those from different ethnic and racial backgrounds respond in different ways to medical interventions. Study populations often do not include an adequate number of Black, Asian or Hispanic participants. Thus, says Coleman, “there is no way of knowing whether the treatments that emerge from these studies will be suitable for members of these communities.”
Coleman suggests ethicists can address the problem by helping develop culturally and linguistically sensitive methods to inform all patients about the availability of clinical trials. Also, help healthcare providers incorporate these tools into their conversations with patients.
A recent policy briefing from the Nuffield Council on Bioethics focuses on equitable access for COVID-19 treatments and vaccines.2 “Inequalities will be exacerbated unless treatments and vaccines can be developed, accessed, and distributed in a fair way,” says research officer Arzoo Ahmed.
The briefing asserts wealthier nations are morally obligated to share treatments and vaccines with low- and middle-income countries. Otherwise, intellectual property rights, patents, and unaffordable prices could keep life-saving treatments from vulnerable people. “People across the world are still dying from conditions due to a lack of access to treatments and vaccines that already exist,” Ahmed notes.
Counties with larger-than-average concentrations of Black people report more COVID-19 cases and more deaths.3 Even in the United States, Zephyrin notes the pandemic has affected communities of color disproportionately.
Zephyrin says this was not surprising, because communities of color face long-standing disparities that affect both health and access to healthcare services. “These disparities are a result of systemic inequities that affect where people live, the ability to access to healthcare, the social stressors that are experienced, and underlying health conditions,” Zephyrin explains.
For ethicists, clear evidence of racial disparities during the ongoing pandemic “continues to show us where we must do better,” says Kathleen M. Akgün, MD, MS, BS, associate professor of medicine at Yale and director of the medical intensive care unit at VA Connecticut Healthcare System.
Ethicist roles often are voluntary, and some institutions work with limited ethics resources. Ideally, enough ethicists are available to participate in deliberations that seek to promote justice and equality. “Including Black and brown members of the community can enlighten ethicists regarding potential blind spots,” says Akgün, co-chair of the clinical ethics committee at VA Connecticut.
Bias is not always blatant; sometimes, it is more subtle. For example, a lack of adequate personal protective equipment (PPE) to protect healthcare workers has been a major concern throughout the COVID-19 pandemic. “Meeting this need has never been questioned,” Akgün says.
It is just as important to protect individuals who clean rooms and transport patients. “But these demands seem to be much quieter, if existing at all,” Akgün suggests. “These jobs are disproportionately held by Black and brown people, in part due to systemic racism that leads to socioeconomic inequality.”4
These workers face unnecessary risk of exposures and illness if they are working without proper PPE. To help ethicists identify these issues, community members can meet with the ethics committee ad hoc. Creating dedicated committees to examine practices that may perpetuate disparity, or directing preventive ethics committees to examine this issue, are two other approaches. “From my experience and perspective, charges of racial disparity are most often arising from institutional practices,” Akgün explains.
- Loree JM, Anand S, Dasari A, et al. Disparity of race reporting and representation in clinical trials leading to cancer drug approvals from 2008 to 2018. JAMA Oncol 2019;5:e191870.
- Nuffield Council on Bioethics. Fair and equitable access to COVID-19 treatments and vaccines. May 29, 2020.
- Zephyrin L, Radley DC, Getachew Y, et al. COVID-19 more prevalent, deadlier in U.S. counties with higher Black populations. The Commonwealth Fund. April 23, 2020.
- Kinder M. Essential but undervalued: Millions of health care workers aren’t getting the pay or respect they deserve in the COVID-19 pandemic. The Brookings Institute. May 28, 2020.