Projects Aim to Boost Minorities in Medical Trials

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From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.

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And I'm Michele Norris.

Every time you take a prescribed medicine, you know it's been tested by hundreds, even thousands of volunteers. You may not know that most of those volunteers are white. Today, the federal government is announcing a new initiative to increase the number of minorities in clinical trials.

NPR's Rachel Jones has the details.

RACHEL JONES: 1.5 million people will be diagnosed with cancer this year. Three to 5 percent of cancer patients participate in clinical trials, which is how new treatments get developed.

Ms. DEBORAH BAQUET(ph) (Director, Center for Health Disparity): And on that 3 to 5 percent, less than 1 percent is African-American.

JONES: Deborah Baquet directs the Center for Health Disparity at the University of Maryland Baltimore's medical school. Yet, African-Americans have some of the highest death rates and poor survival rates of any population in the country.

Baquet says that some of the most underserved and adversely affected communities aren't involved in research. It may be impossible to develop the treatments they desperately need. So, Congress has teamed with Baylor University and the Intercultural Cancer Council to develop some new online tools. They'll give doctors and researchers strategies to help make clinical trials more appealing to minorities.

Researchers agree one of the main reasons minorities don't participate in clinical trials is lack of trust. Most people have heard of the Tuskegee Experiment, which ran from 1932 until 1972. In that study, black men with syphilis weren't told about or treated for the disease, just studied. But Garth Graham says the distrust dynamic pre-dates Tuskegee...

Dr. GARTH GRAHAM (Deputy Assistant Secretary of Minority Health, Department of Health and Human Services): Back in the 1800s, a doctor Marion Simms, who has taught to be the father of modern gynecology. We know he specifically purchased African American slaves to perfect gynecologic surgical procedures.

JONES: Graham's Deputy Assistant Secretary of Minority Health at the Department of Health and Human Services. He says, even though the government mandates increase in order of participation back in the early 90s, the message didn't get through.

Dr. GRAHAM: If you look at much of the data or on clinical trial, closely to 9 percent of individuals are from the majority population.

JONES: That's in federally funded research and in pharmaceutical company trials. Officials want to create a standard practice for recruiting minorities in clinical research. But Graham says all that really takes is some plain, old common sense.

Dr. GRAHAM: How to talk to people. What are some of the perceived problems that he might already have based on history and things that they have experienced in their own personal life. And really helping these folks understand, how is it you talked to folks?

JONES: Graham says one-on-one conversations can go a long way in easing that distrust. The new initiative will help link doctors and researchers to community-based resources that can educate minority communities.

Dr. GRAHAM: It's important for people to realize that that research is going to help not just yourself. It can help your kids and your kids' kids and your children's children's children.

JONES: The bottom line goal for clinical research is producing treatments and cures for deadly diseases. Graham says those kinds of culturally appropriate conversations are the best way to help minorities look forward with hope from medical advances. Not back at past research abuses.

Rachel Jones, NPR News, Washington.

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