African-Americans often say no to clinical trials

African-Americans often say no to clinical trials. Our reporter asked her mom 'Why?'

All the big-name medicines you know about are tested for safety and effectiveness before they reach the pharmacy shelf. And before that — hundreds or thousands of people had to agree to participate in the clinical trial. It's how researchers find cures.

However, women, people who live in rural communities, older adults, and members of ethnic and racial minorities are often missing from those studies. That means some of those blockbuster medicines could have an asterisk on the label that says: "Tested on middle-age white guys, but we're hoping it helps you too."

In particular, there's a big, indisputable, "so-called" truth that it's especially hard to get African-Americans to sign up for clinical trials. It's complicated, of course, because it's not clear that black people are being asked to volunteer in ways that are effective. Add to that: Hesitation among African-Americans is a subset of a national ambivalence about volunteering for medical research. Just 35 percent of all Americans are likely to enroll in a clinical trial, according to a survey from the Sloan Kettering Cancer Center in New York.

Why does a good mix of study participants matter? Scientists want to know if how people live (their experiences, education level, stress or income — any of these factors) makes a difference in whether a drug or treatment works or not.

"When we do include people of color in our research and in our clinical trials, we are much more likely to find how these treatments actually perform in the real world," said cognitive neuroscientist Jonathan Jackson, a research fellow at Harvard Medical School. He's looking for ways to detect dementia early — and is part of the Alzheimer's Disease Research Center at Massachusetts General Hospital.

Across the country, African-Americans are "overrepresented in the disease, underrepresented in the research."

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