Lead Advisor Dana Abramovitz discusses the importance of diversity in clinical trials.
September 30, 2022
Diversity, Equity, and Inclusion (DEI) is trending prominently across many businesses of late. Unfortunately triggered by racial protests, businesses have strengthened or created DEI initiatives to address this issue in their organizations. Global professional services firm Genpact (NYSE: G) just released the results of a study which looked at the use of technology to help businesses use data to design and implement their DEI strategies. Failing to address this could translate into devastating circumstances ranging from employees leaving to customers boycotting.
DEI has been an issue in the health care industry for decades, but perhaps in a different context. For a long time, clinical trials were centered around white men, oftentimes medical students who volunteered to participate. With the passing of the 1993 National Institutes of Health Revitalization Act, the agency (NIH) was required to include more women and people of color in their studies. The number of women participants increased but not people of color.
As we saw with the COVID vaccines and other studies, minority groups are hesitant to participate in clinical trials, and rightfully so. The Tuskegee Experiments, in which Black men with syphilis were left untreated to see how the disease would progress, or the commercialization of immortalized breast cancer cells, HeLa cells, taken from Henrietta Lacks and used without her knowledge or compensation, not to mention the generations of people who were part of medical experiments against their will, have definitely given minorities reason to question, if not avoid, participation.
Unfortunately we can’t have precision medicine until we have a better representation of the population. Genomics and genotyping studies require comparing the results of one person’s data to that of the population. If the data population is primarily from people of European descent, genomics to study breast cancer in black women or traits across the Latinx community cannot be discerned. I recall an early adopter of the 23andMe (NASDAQ:ME) platform who is South Asian finding her results completely useless because there were so few people of South Asian descent on the platform at that time.
The FDA released a new guidance to promote more diversity in clinical trials and as a result, drugmakers are responding. Large pharma companies like Novartis (NYSE: NVS) and Merck (NYSE: MRK) are starting to recognize the need for diversity in clinical trials, with Novartis creating its Beacon of Hope Initiative. Private company Acclinate is helping pharma and contract research organizations (CROs) achieve diversity in clinical trials.
Now that we have a better understanding of the science and genomics that decades of research have produced and companies like Illumina (NASDAQ: ILMN) and Agilent (NYSE: A) support, precision and personalized medicine should be attainable. DEI approaches in health care to help us achieve precision medicine and health equity should be as important as the cultural DEI initiatives of corporations outside of the health care industry. Because in health care, diversity, equity, and inclusion could mean the difference between life and death.
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