Amid all of the hoopla around the All of US initiative, some scientists point to one development that has been too long coming – the inclusion of more genetic data from people of color.
The effort to collect data from at least 1 million people will include an emphasis to actively seek out more minorities for inclusion in the research, resulting in more accurate data about the overall population and remedying "a long-time discrepancy that has real health impacts," the Smithsonian writes.
For example while African-Americans have the highest prevalence of hypertension of any group in the US, treatments and standard and care have been based on studies of middle-aged white men, Jacquelyn Taylor, an associate professor in nursing at New York University says.
The lack of diversity in genomic research is not exactly new news, of course, and a 2016 study in Nature found that 87 percent of participants in genomics research globally were of European descent. At the recent Biodata World West conference, experts also discussed the need for greater diversity to harness the potential of precision medicine.
Smithsonian also notes that the 87 percent figure is an improvement from a 96 percent figure calculated by Duke University researchers in 2009. But even that 87 percent number is open to scrutiny as most of the non-European representation is from studies conducted in China, Japan, and South Korea, and the increase in diversity didn't include other ethnic groups. People of African descent made up only 3 percent, and Hispanics didn't even reach 1 percent, one of the authors of the Nature study says.
But even with a greater focus on including people of color in genomics studies, they may not be willing to participate. "There's a history of medical mistreatment that prevents minorities from getting really excited about volunteering," Tshaka Cunningham, science advisor for the Minority Coalition for Precision Medicine, tells the Smithsonian, pointing to the examples of Henrietta Lacks and experiments performed on African-American men in Tuskegee, Alabama between 1932 and 1972.
Henrietta Lacks was an African-American woman whose cancer cells were used for medical research without her consent. In the Tuskegee incident, experiments were performed on the men who were never told they had syphilis or were never offered penicillin as treatment.
Further, minorities may not have the financial resources to participate in genomics studies or they may live in areas not near highly regarded urban medical centers where recruitment for such work has typically been done.