Racial Injustice in U.S. Health Care Calls for a Truth and Reconciliation Commission, Bioethicist Says
The COVID-19 pandemic has exacerbated the deep fissures in our nation’s health care system, accentuating tragic disparities largely along racial and ethnic lines and highlighting the need for an immediate exploration of the underlying structural racism so that health care can become more inclusive and equitable, according to Maya Sabatello, LLB, PhD, associate professor of medical sciences in the Division of Ethics in the Department of Medical Humanities and Ethics and in the Department of Medicine at Columbia University Vagelos College of Physicians and Surgeons.
Sabatello, an expert on human rights and the ethical, legal, and social implications of genetics, proposes a COVID-19 Truth and Reconciliation Commission. “These commissions began as a way to help authoritarian governments recover from their abusive pasts and transition toward democracy without being punitive,” Sabatello says. “The United States may not be a fragile democracy, but our health care system—who controls it, who benefits from it—resembles an autocratic regime.”
In a paper published in the American Journal of Bioethics, Sabatello and colleagues outline a forward-looking path to break the cycle of disparity and create a nationally equitable health care system.
Why do you think a Truth and Reconciliation Commission could help address the inequities exposed by the pandemic?
Truth and Reconciliation Commissions are an attempt to establish and publicly record the experiences and scale of the physical and emotional harm caused by past injustices. They help us think about the experiences of victims and perpetrators so we can develop ways to address and overcome systemic issues. A Truth and Reconciliation Commission is aimed at acknowledging wrongdoing and learning from injustices in order to move forward.
A Truth and Reconciliation Commission would allow racial and ethnic communities that have been targets of structural racism and have been disproportionately impacted by the COVID-19 pandemic to speak up and share their experiences in a forum that aims to lead to real change. This would include Black/African American, Latinx, and Indigenous communities but should also be inclusive of other groups experiencing structural discrimination. It would also give clinicians a forum to have conversations around the systemic issues they face in providing equal care so that they can help reconstruct the system. Additionally, it’s a constructive way for administrators of health care systems and politicians to hear the perspectives and the pain that’s caused by their decisions in order to promote systemic and structural changes.
What are the most important ethical issues raised by the pandemic?
In addition to the need to assure equal access to quality care for everyone, we need to think about medical research that can significantly impact care.
We conduct a lot of research in this country, and we need a lot of participants to do that research, but we do not have an equitable process in place to assure that participants can benefit from this research. Many of these participants may not have access to COVID-19 treatments or vaccines because they don’t have health insurance, or have only limited health benefits. It’s time to fix this and make sure that everyone—particularly marginalized communities who have paid such a high price because of previous wrongdoing—can benefit from the scientific knowledge that comes out of research.
We need to have more extensive consideration of cultural diversity in research. Community engagement in research—obtaining the views of different communities, seeing them as partners, discussing the pros and cons of research, and finding ways to address concerns—is essential for us as we move forward.
We also need to reconstruct the health care system so that it is completely inclusive and allows everyone to have equal access to quality care. The United States is the only developed country that does not offer a national health care plan, and although the Affordable Care Act has increased access to care for some, there are still very significant gaps and disparities.
Creating a new health care system requires us to deal with the structural racism that exists in all aspects of society and has a significant health impact on racial and ethnic minorities. This means looking at racial and ethnic bias in medicine, understanding the health needs of racial and ethnic minorities, giving proper attention to these health needs, and increasing the diversity of health care providers to better understand patients’ backgrounds and the cultural nuances that affect health.
Are there any other communities we need to consider when addressing inequities due to the pandemic?
The disability community frequently gets left behind in these discussions, yet about 26% of the U.S. population and 20% of the pediatric population has a disability. We still don’t have data about how many people with disabilities were sick or died of COVID-19. An array of factors prevents people with disabilities from getting good care, yet the prevalence of the underlying conditions that increase COVID-19 morbidity and mortality is far higher among people with disabilities.
People with disabilities are often wrongly presumed to lack capacity and to have a lower quality of life than what they actually experience. That is another ‘ism’ we have to deal with as we address ethical issues related to our health care system, medical research, and the pandemic more specifically. COVID-19 will likely increase the number of individuals with disabilities, since the disease has lingering physical, cognitive, and psychological effects.
We are seeing more conversations about vaccine distribution in nursing homes, where many younger people with disabilities live alongside elderly residents. We have to ensure that people with disabilities are included in clinical trials and have access to the vaccines.
Is there a risk, given COVID-19 disparities, that communities of color will be blamed for the pandemic?
It’s easy to blame the individuals who are already discriminated against—we tend to scapegoat those who are less powerful. It happened during the 1918 pandemic, and it’s obviously a risk now. It’s harder for us, as a society, to take responsibility for environmental factors and sociopolitical structures that caused the disproportionate COVID-19 harm to communities of color. But this is exactly what needs to be done—and a Truth and Reconciliation Commission can facilitate that.
Viruses do not discriminate on the basis of race, ethnicity, or skin color. They have more power among people living and working in more dense environments, among those who don’t have the opportunity to isolate.
I think we need to be extremely careful when we start looking for genetic differences to explain risk for certain diseases in research. I think that funding bodies have a huge responsibility to ensure that research is being done in the right way, so that they don’t fund research projects that raise the risk of further stigmatizing historically marginalized communities.
We know that our genetic makeup is more than 99.9% similar across racial and ethnic groups and that there is greater diversity within, rather than across, these racial and ethnic groups. We need to work harder to change the structures that put racial and ethnic minorities at risk.
How would a COVID-19 Truth and Reconciliation Commission get started?
Ideally, the federal government would initiate a post-COVID-19 Truth and Reconciliation Commission, but it may not be feasible since our political system has become so polarized. Instead, we may need to rely on state-level decisions and allies across economic sectors, academic institutions, and state governments that are standing up now and saying enough is enough. We need to take advantage of the momentum, engage with anyone who’s willing to be part of that conversation, and, importantly, start acting on it.
The paper, titled “Structural Racism in the COVID-19 Pandemic: Moving Forward,” was published Dec. 19, 2020, in the American Journal of Bioethics.
Other authors are Mary Jackson Scroggins (Pinkie Hugs LLC, Washington, DC), Greta Goto (Stone Soup Group, Anchorage, AK), Alicia Santiago (Anthem Inc., Los Angeles, CA), Alma McCormick (Messengers for Health, Harding, MT), Kimberly Jacoby Morris (National Human Genome Research Institute, Washington, DC), Christina Daulton (National Institutes of Health, Bethesda, MD), Carla Easter (National Institutes of Health), and Gwen Darien (National Patient Advocate Association, New York, NY).
Maya Sabatello receives funding from the National Institutes of Health (K01HG008653 and R01HG010868). The views expressed in this article are the authors’ and they do not represent the views of the NIH, HHS, or the U.S. government.
Maya Sabatello is a member of the All of Us Research Program’s Institutional Review Board. The authors declare no other conflict of interest.