FindMeCure: Ethnic Diversity in Clinical Trials is Crucial

Minorities participation in clinical trials is disproportionately low compared to their numbers in the general population of the US, even though a 1993 law requires that medical research paid for by the National Institutes of Health include a proportionate number of minorities and women to check whether they respond to treatment differently than other groups.

However, the trials not paid for by the NIH are off the hook, so to speak, and can choose to disregard this law. Often such trials are sponsored by the company that makes the drug and in those cases, the top priority is getting the drug on the market (after it’s been proven safe)– finding and enrolling participants from minorities slows down the process.

Obstacles

Other factors play a role too. Minorities are often underprivileged in many areas of life, including income and education, thus they have the lesser awareness of clinical trials and how to participate. Patients from minorities are also more likely to have other conditions that make them ineligible for studies.

Another obstacle is doctors assuming some patients would not want or have the resources (such as time for regular check-ups and money for travel expenses) to become participants – and so they don’t ask.

It’s true that differences are only skin-deep, as shown by the results of the trial for sunitinib – a drug for kidney cancer (find clinical trials here) – which is more likely to cause skin problems in Asians as compared to whites. It also shows that participation of minorities is important, even though socio-political standing is the main difference and not so much biology.

Talking about socio-political standing, lower enrollment of minorities in clinical trials fits in the larger context of unequal care and unequal access to medical treatments for some groups.

So, what can be done?

As with anything else, things are a bit more complicated than they seem. On the one hand, a possible solution is conducting research focused on specific racial or ethnic groups.

However, one can argue that requiring a certain level of minority groups participation can lead to pressuring patients in the name of filling a quota. On top of that, some trials are international, meaning it’s harder to define “minority” in countries with different racial and/or ethnic makeups and it’s also trickier to say what a proportionate number of participants would look like.

Author: Nelly Katsarova