Ending Race Disparities: ‘Less About Clinical Interventions, Much More About Ethics’
Since 1986, Stephen B. Thomas, PhD, has been studying racial health disparities.1,2 Thomas, a professor of health policy and management at the University of Maryland and director of the Maryland Center for Health Equity, sat with Medical Ethics Advisor (MEA) to share some insights about this subject. (Editor’s Note: This transcript has been lightly edited for length and clarity.)
MEA: Why do healthcare disparities persist despite being so well-documented?
Thomas: In 1985, Health and Human Services Secretary Margaret Heckler issued the first Report of the Secretary’s Task Force on Black and Minority Health. For the first time, the federal government put into one place all the data documenting excess death among [minorities] who were dying before their time. If they were white, they would not be dying this soon. They would not be living this sick. The following year ... the federal Office of Minority Health was created. That’s the beginning of what we would call the modern period of acknowledging premature death based on race and ethnicity. In the 1990s, there was a new initiative [from the National Center for Health Statistics] called Healthy People, with targets for every 10 years. In the early phases, they actually set different goals based on race. As an example, the objective for infant mortality was different for whites than Blacks. In the 2000s, they changed that, [set] one set of goals for everybody, and charged the field to close the gap. Now, there is a National Association of State Offices of Minority Health.
But this infrastructure is not being talked about. Under the Affordable Care Act, the Office of Minority Health now reports directly to the secretary of Health and Human Services. But I have never heard [current HHS] Secretary Alex Azar mention this office. We’ve been marginalized. Progress has come as a result of struggle, not as a result of enlightenment. People have been clawing their way into the mainstream, yelling at the top of their lungs. Health disparity scholars have been documenting the association between health disparities and poverty, premature illness and death, and lack of access to healthcare for decades. We are demonstrating, and publishing, the fact that racial discrimination exists in our healthcare delivery system. It would be easy to ignore if it were not so well-documented.
MEA: What is the role of ethics?
Thomas: It’s less about clinical interventions and much more about ethics, about caring. You’ve got to care. You have to have some empathy.
In the aftermath of the Tuskegee study, which is the quintessential story of research abuse, there were congressional hearings and the creation of the Belmont Report, which identified the ethical principles to be used in research involving human subjects.3 The first principle is respect for persons — autonomy and respecting the person’s right to make an informed decision. The second is beneficence — to do no harm. But the third principle is justice — that those who bear the burden of research should not be denied the benefits. It’s the ethical principle of justice that has been ignored and underdeveloped by healthcare professionals. Ethicists’ focus is on end of life — who gets an organ, allocation of scarce resources, conflict of interest. But what about justice? What about the fact the gynecological surgical procedures that are standard operating procedure right now were developed during a time when Black women were used like guinea pigs, often without anesthesia?
MEA: How did the COVID-19 pandemic bring race disparities to light?
Thomas: The pre-existing conditions [that can exacerbate COVID-19] we are hearing about — asthma, diabetes, obesity — those are all the disparities that we [have been] studying for the past 30 years. My first question was: Why are they not giving any information on the racial and ethnic breakdown? Members of Congress demanded that data be released by race, ethnicity, and ZIP code. Only a few states did it ... it’s a patchwork. This is an ethical concern. Using surveillance data and computer models, our science is so good and so precise that if you tell me your ZIP code, I can predict your life expectancy. Your ZIP code should not determine your life expectancy.
We in public health underestimate how our epidemiologic data will be used. We are so excited to have analytics, but we are observing these people as though they are simply data points. We can pinpoint these things. But while we are doing all that pinpointing, those people still suffer. They are sick and tired of their suffering to be used to advance the careers of others. It’s very interesting that it’s a novel infectious disease that has brought attention to this in a way that nothing else has. If data would have done it, we would have been here a long time ago.
MEA: Why is there good reason to hope that things will actually change this time?
Thomas: It’s the confluence. It’s the racism exposed by the murder in front of our very eyes, the outpouring of demonstrations not just in Minnesota or nearby states, but around the world. It’s a worldwide phenomenon.
There is a reckoning going on. Health and medicine and even physicians are not immune from the history of racism. It’s time that we, too, looked in the mirror. There should be a laser focus on the COVID-19 vaccine and treatment trials. Who will ultimately be in the clinical trials? If the people in those trials are not diverse, what does that tell us? If the people cannot afford treatment that comes from clinical trials, what does that tell us? We’ve been here before, and we must fight today for a better tomorrow.
- Thomas SB. Racial and ethnic disparities as a public health ethics issue. In: Mastroianni AC, Kahn JP, Kass NE (eds.). The Oxford Handbook of Public Health Ethics (Oxford University Press; 2019).
- Thomas SB. The color line: Race matters in the elimination of health disparities. Am J Public Health 2001;91:1046-1048.
- Quinn SC, Kass NE, Thomas SB. Building trust for engagement of minorities in human subjects research: Is the glass half full, half empty, or the wrong size? Am J Public Health 2013;103:2119-2121.
A leading expert explains why disparities persist and how ethicists can help.
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