Around 40 percent of Americans are minorities, ethnically or racially. However, the people who are studied for clinical trials aren’t generally minorities.
Clinical trials are used to determine which medications will prove to be beneficial for the general public. Doctors use these tests to determine how to prescribe medicines to patients. However, when the patients who participate in the clinical trials aren’t the same patients that are visiting the doctors and taking medications on a regular basis, problems can arise. In general, not enough people of color are involved in the clinical trials.
Sam Oh, an epidemiologist at the University of California San Fransisco Center for Genes, Environment and Health states that “we’ve known for years that certain drugs don’t work on parts of our population.” Oh was one of 14 researchers who discovered that biomedical research is often not an accurate measure of the overall American population. The study was recently published in the PLoS Medicine journal.
Oh also shares that just 2 percent of the medical studies for cancer, and less that 5 percent of pulmonary studies have included “enough minorities to provide useful information.” Due to the genetic differences in racial and ethnic groups, some people process medications differently than others.
For example, clopidogrel, which is known by the brand name Plavix, is not effective for 75 percent of people of Pacific Islander descent. These people’s bodies do not make the enzyme that is necessary to activate Plavix. For these individuals, taking Plavix is the same as taking a placebo. Also, individuals who are of Asian descent and have epilepsy are supposed to receive genetic testing before they are prescribed carbamazepine, an anti-seizure mediation. This drug can cause skin and internal organ damage for Asian patients with a particular gene variant.
Oh also shares that “African-Americans and Puerto Ricans don’t respond well to some of the most common asthma controller medications, and that’s really a tragedy since these two groups are the most affected by asthma in the United States.” He also states that by coming across information like this, some medical professionals may wonder why these disparities are so prevalent. He says that “part of that reason might be because our biomedical studies in the past have not recruited as heavily in those populations.”
There are several reasons why minorities are not represented enough in biomedical research. They include limited specialty health care center access, since these centers are where people are recruited to participate in clinical trials. Minorities are also underrepresented in these trials due their fear of medical research. This stems from scandals like the syphilis stud at Tuskegee Institute, in which medical researchers crossed a number of ethical barriers when testing minorities.
Dr. Michael Lauer, who oversees grant applications for the National Institute of Health, states that “there have been some bad experiences–some very bad experiences–which have appropriately led people in minority communities to have less trust in the researcher environment than they otherwise might have.” Dr. Lauer also shares that things are starting to improve. He says that “between 2010 and 2014, the proportion of participants in [Phase III] clinical trials who are black has increased from 10 percent to 23 percent.”
The importance of creating and promoting clinical trials that are more diverse as been one of the missions of the National Institute of Health for nearly three decades, which the Office of Minority Health was established.
The review boards determine which medical studies receive funding, and as of now, the studies, overall, are 90 percent White, according to Oh. This information was provided as a result of the Freedom of Information Act. The researchers who are applying for grants are also predominately White. These are factors that Oh and his colleagues are working to change, since people are more likely to participate in a clinical trial if the recruiter speaks their language or looks similar to them in race. Oh stresses the importance of having scientific team and staff members that are diverse in order for the results of the trial to be especially accurate.
The National Institute of Health also discovered that Black applicants were 10 percentage points less likely than their White counterparts to win a research grant. The organization recently created a position in order to increase diversity in the medical research field. Oh points out that the disparity in grant issuance between Black and White researchers has been present for about 30 years.
The Institute’s tight budget hasn’t helped to make clinical trials more diverse, either. The grant money, which recently got a boost from Congress, has prompted medical researchers looking for funding to look for creative ways to reduce their proposed budgets.
Oh shares that one of the ways researchers cut their budgets is to take away the money that should be used to recruit minorities. Getting non-White people to participate in the study costs more money due to the community outreach, advertising, language translations and advertising that will attract minorities.
Some researchers are now calling for diversification among the grant application review committees. Minority recruitment should be a vital part of determining whether the medical studies are scientifically sound.
Oh says that as the United States is becoming increasingly more diverse, truly accurate studies could help to significantly reduce the more than $300 billion that is lost every year due to health disparities.