Why Race Matters in Personalized Health Care – Scientific American
The COVID pandemic, combined with growing support for racial justice, has brought the issue of inequity in health care to the fore. This issue is nothing new—racial and ethnic disparities have been well documented in terms of unequal medical delivery and measures of health treatment outcomes—but now is the time for the medical community to make meaningful changes and address these gaps in care.
As a woman of color in the biotech industry, I have a personal and professional interest in addressing these disparities. Furthermore, as a researcher, I have often wondered exactly what causes racial differences in disease rates and treatment response, and whether we might be able to reduce disparities and combat some diseases more effectively with a better understanding of the factors involved. Systemic racism clearly plays a major role, as do socioeconomics, environment and culture. Although race is a social rather than biological construct, there are inherited genetic variations that play a role in drug response and adverse drug reactions—and genetic variations differ among different ethnicities.
Parsing these factors is of more than academic interest. For example, the most commonly prescribed medication for asthma, albuterol, may not always be as effective for people with African ancestry as it is for people of European descent. It took several years after albuterol was approved and, on the market, to gain more understanding of its suboptimal efficacy in Black people. With a better understanding of genetic variations that contribute to these differences, we may be able to provide more effective treatments for a group of children who are nearly twice as likely to have asthma than their white peers.
This kind of research highlights the need for clinical trials to be inclusive of patients that are more affected by the disease and thereby more likely to benefit from new treatments. I’ve considered the possibility that such an approach could have helped my father, who was diagnosed with diabetes when I was a child. He often struggled with complications of diabetes despite taking medications. As a researcher, I’ve wondered if these problems, including his poor response to medications, had anything to do with his racial and ethnic background. But I have no way of knowing, because, even today, we still lack the appropriate level of diversity in clinical trials. In addition, more research needs to be done to understand racial differences in diabetes or why it is 60 percent more common among Black people in the United States compared with white people. Clearly, we need to consider that differences may be attributed to more than just lifestyle and that the answer may lie in a difference of genetic variations.
I began seriously investigating these types of questions as a research fellow at Vanderbilt University, where I looked for reasons why some Black people tend to have more aggressive salt-sensitive hypertension. My results revealed a genetic variant within the Ghanaian population that affects the kidney’s capacity to process salt. The genetic variation was associated with increased blood pressure among men. But this is only one piece of a bigger puzzle; it remains to be understood exactly if or how this variant makes a difference in current treatment and long-term outcomes.
Today, as executive director of clinical development at Horizon Therapeutics, I’ve become intrigued by racial differences in thyroid eye disease (TED), which is a serious, progressive and vision-threatening rare autoimmune disease that causes eye bulging, misalignment, double vision and, in rare instances, blindness. These symptoms result from severe inflammation and expansion of the tissues behind the eye, usually as a result of hyperthyroidism or Graves’ disease.
TED is not often diagnosed in the Black population, even though its most common precursor, Graves’ disease, is more common among Black people than white people. My team has examined this discrepancy in the literature to understand whether there is some factor that protects Black patients with Graves’ disease from progressing to TED, or if the condition is simply underdiagnosed in this group because of disparities in care. Since there is limited literature discussing TED in Black people, I connected with our external expert, endocrinologist Marius Stan at the Mayo Clinic.
Together, we speculated that Black people may have more of their eyeball naturally exposed; thus, any inflammation would have to be quite significant to protrude the eyeball even further forward. It is unlikely for this to happen often, so most TED cases are considered unnoticeable or mild in this group. Understanding the ethnic differences in any disease leads to better advances in diagnostics, treatments and outcomes for all. TED is no exception.
It’s encouraging that biotech and biopharma companies are focusing on this issue and exploring how to appropriately consider racial diversity in their clinical programs and processes, but we cannot rely solely on individual action to rectify this problem. It is time for collective action to address the problem of racial disparities in health care.
In the absence of specific standards, we need strong advocates across the entire health care industry loudly championing these efforts. In my view, we need:
- An industry-wide commitment on racial diversity in clinical trials because the goal of any development program is to have the study population inform treatment for the patient that is likely to use it in a real-world setting.
- To design clinical trials to reflect the real-world distribution of a disease—so if a certain percentage of people with a disease are Black, the industry should recruit that same percentage of Black participants for a trial researching that disease. We are currently falling short because physicians do not ask or educate Black patients about participating in clinical trials. For all those years, my father was never asked to participate in any diabetic clinical trial. Change needs to happen at the doctor’s office, too.
- Increased research into racial differences in disease manifestation, and understanding how socioeconomics, ancestry, ethnicity and other factors come into play.
- To engage, provide support and help build a culture of including historically Black medical institutions such as Meharry Medical College in Nashville, Tenn., in clinical trials.
- To make a dedicated industry investment in educating and training young Black physician investigators on how to conduct clinical trials, while also educating investigators of all races about the importance of clinical trial diversity.
By pursuing these goals, our industry can start to address the inequity that has plagued clinical scientific research for decades. But this is only the beginning. I encourage and welcome conversations surrounding racial disparities in health care from my biotech and biopharma industry colleagues, fellow clinicians and scientists, regulatory agencies and patients. Because true equity can’t be achieved until we discuss these issues, take action in our own research and work to lift up the communities impacted by disparities.
This is an opinion and analysis article.