David Kerr: Health professionals’ selective mutism about research discrimination

david_kerr_2015picPresident Donald Trump touched a raw nerve with the executive order to ban, temporarily, visitors from seven predominantly Muslim countries. Amid the wide global outcry, there were also calls from international clinicians and academics, including Nobel laureates, to boycott medical meetings in America. Yet at the same time, health professionals here in the US and elsewhere appear to be unmoved (or maybe uninterested) in another form of discrimination, which has been persistent throughout previous political administrations: the relative paucity of black, Hispanic, and Asian Americans in medical research and innovation.

America is a diverse country. According to the United States Census Bureau, the population increased by almost 10% between 2000 and 2010, with more than half of the growth due to the increase in the number of people of Hispanic ethnicity. Over the same period, the proportion of non-Hispanic white people declined from 69% to 64%. Currently, the number of people who identify as black or African-American make up 13% of the total population, while Asian people make up 5% (after the Hispanic community, the Asian population had the second largest growth over the previous decade).

For many years, the National Institutes of Health (NIH) has required that different racial and ethnic populations and women be included in the clinical research trials that it funds. Unfortunately, the US continues to have an unenviable reputation of excluding women from clinical trials. Moreover, the racial background of America is not reflected in medical research involving new medicines, as people from ethnic minorities still make up a disproportionately low percentage of participants in research.

As an example, in recent mega-trials focusing on reducing cardiovascular risk in type 2 diabetes, African-American people made up less than 5% of recruits, despite this population having an excess burden of the condition compared to non-Hispanic white people and the serious complications associated with it. A similar scenario exists for individuals of South Asian ancestry.

The representation of different racial groups during the approval processes for new drugs is important, especially given the evidence that perhaps one fifth of the therapies approved over the past few years have differences in drug metabolism or response by race or ethnicity. If the pharmacogenomics of different ethnic populations are better understood, it is likely that the efficacy of precision medicine will be improved.

It’s also worth observing that, with the increasing cost of new drugs, insurers are likely to demand more robust evidence of efficacy in specific populations. Proving the value of certain medicines for those with the greatest risk, and who therefore have the most to gain from treatment, makes costas well as moralsense.

There could be a number of reasons for why different racial and ethnic populations don’t feature in research studies. In the US, national statistics suggest that poverty rates among African-American and Hispanic people are more than double that for non-Hispanic white people. Consequently, finding the time and effort to participate in research may be too costly, as well as challenging, for low income individuals who often have more than one job. There may also be a nihilistic view among the sponsors of clinical trials that recruiting ethnic minorities is simply too difficult and expensive. And it may be a factor that researchers are less likely to ask for participants from different backgrounds.

It’s also worth noting that people tend to trust researchers when they come from similar racial or ethnic backgrounds, but less than 2% of NIH funded research leaders are black. The medical establishment’s historical abuse of black Americans may also still cast a shadow: with the memory of notorious studiessuch as the infamous Tuskegee experiment, during which hundreds of black men with syphilis were left untreatedstill leaving lingering doubt and mistrust. There are many other examples of this so called “medical apartheid.”

Politics in America is currently polarized, with both sides exhibiting paraprosdokian tendencies best summed up as: “If I agreed with you, we would both be wrong.” At the same time, racial inequality is still the unresolved American dilemma. To paraphrase Melvin Oliver, a prominent African-American scholar, for too long healthcare delivery has been forged on the contradiction of the promise of equality and its systematic denial. Perhaps then it’s time for health professionals to raise their voices in protest of this particular long standing inequality?

David Kerr wears many hats—physician; editor of Diabetes Digest; and founder of DiabetesTravel.org, a free service for travellers with diabetes, and Excarbs.com, which focuses on exercise and insulin. He is director of research and innovation at the William Sansum Diabetes Center in Santa Barbara, California, and mHealth lead for the Diabetes Technology Society (unpaid). You can follow him on Twitter (@GoDiabetesMD).

Competing interests: The author has no relevant competing interests to declare.