As a person of color, her presence in clinical studies is rare. The National Institutes of Health has found that minorities make up less than 10 percent of trial participants.
This is a major problem because we can’t know for sure if medications will work in a population till we test it in them.
And it’s significant… but given genealogy, “testing for race” raises its own problems, because a “black” person may or may not have inherited the tendency to be resistant to β-blockers, and a “white” person may be in the “black-like” minority. And of course, if one only authorises drugs that work for everybody, then you’re limiting the chances of many for successful outcomes.
One of the positives of genetic medicine is the possibility of tagging your medical record with your genome, and that would not only enable targeted treatment, but presumably enable one to get the crudities of “race” out of research.
And black patients often have inferior access to health care in the first place. I see this on a regular basis, but if it isn’t the focus of a study it rarely gets more than a mention in the discussion, if that.
Given the abuses of minority populations in past medical studies, the lack of participation may be in part to minorities not wanting to participate (e.g Tuskegee syphilis study). Study coordinators may also shy away from enrolling minority patients because they don’t even want to take a chance of looking bad in case there is a problem in the study.
It is noteworthy that these topics are approached head on in most human subjects training that scientists participate in. There are many ethical questions related to including and excluding vulnerable populations, everything from sabotaging consent by offering inappropriate financial rewards to withholding benefit from minority populations by not enrolling people from those populations.
Huge issue. Thanks for bringing it up. Medical practice is gradually being individualized through comparative genomic research and other means, but to show such deficiency in basic research protocols borders on --or outright constitutes --racial discrimination.