Why minority representation in medical research is a matter of life and death

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• Judy Woodruff:

  The country's diversity is becoming ever greater, but medical research that could benefit the populace is not keeping pace.

  A recent review of government-funded cancer research studies found that all racial and ethnic minorities were considerably underrepresented. It also found that fewer than 2 percent of these clinical trials focused specifically on the needs of minorities.

  There's growing awareness of the problem, and there are some new and promising efforts to correct it.

  Special correspondent Cat Wise has the story.

  It's part of our regular coverage about the Leading Edge of science and medicine.

• Brittani Powell:

  Seventy questions…

• Cat Wise:

  Brittani Powell wasn't supposed to be here in 2019, on the campus of Sacramento State, studying to become a doctor. In middle school, she was paralyzed. Her doctors told her that treatment for the large-scale cancerous tumor pressing into her spine had failed, that she would likely be dead within months.

• Her only hope:

  a game-changing clinical trial that her mom found in Santa Monica, nearly 400 miles from home.

• Brittani Powell:

  And the issue became, how are we going to get there every week just for the loading dose? Because, for the first month, we had to go once a week. And then, after that, we'd have to continue to go once a month.

  And at this time, she's out of work, and we don't have any extra funds to continue to drive down there and to support the household.

• Dana Dornsife:

  So, this is Brittani.

• Cat Wise:

  Brittani and her mom needed some help. And they got it from this woman — Dana Dornsife. She runs a nonprofit in the Bay Area called the Lazarex Cancer Foundation.

  The organization fills a gaping hole in the cancer treatment world by paying for the travel expenses a low-income patient needs to get to a clinical trial.

• Paige Wycoff:

  It says you are looking for assistance with parking, tolls and gas. Is that correct?

• Cat Wise:

  And that simple fix may help solve another gaping hole in medical research, says Dornsife.

• Dana Dornsife:

  Unfortunately, many minority communities are grossly underrepresented in clinical trials because they can't afford to get there. In this world of drug development, where everything is happening, you know, at a sprinter's pace, right, we're not taking the time to overcome that divide.

• Cat Wise:

  Brittani Powell is now-cancer free, thanks to the clinical trial. But she was lucky. According to the Food and Drug Administration, only about 30 percent of clinical trial participants for cancer drugs come from minority groups. The rest are white.

  In an era of precision medicine, when drugs are being developed for and tailored to specific segments of the population, diversity is essential, because some diseases and drugs impact racial groups in different ways.

  George Ocampo has been part of the Lazarex push to reverse those numbers. He couldn't work during five grueling rounds of chemo for pancreatic cancer. A clinical trial for a new treatment, two hours from home, didn't seem like an option.

  Lazarex has footed the bill for his trips to the University of California, San Francisco — the gas, tolls, parking, and hotel stays — while he participated in the trial. They also pay for airfare for those traveling longer distances.

  Those seemingly small interventions have helped Ocampo and other patients access cutting-edge care they otherwise wouldn't have received.

• George Ocampo:

  And, hopefully, it gets FDA-approved, and then it will be a drug that will be here for a long time.

• Cat Wise:

  A randomized controlled trial of Lazarex's interventions found the financial assistance can have a big impact.

  Minority participation in Lazarex-backed studies at UCSF and the University of Southern California was 78 percent, compared to national statistics for minority groups in cancer oncology trials. The FDA's recent report found just 15 percent were Asian, 4 percent were black or African-American, and 4 percent were Hispanic.

  Lack of diversity is a problem that extends well beyond clinical trials. Basic research has also been long dominated by people of European ancestry.

• Dr. Daniel Weinberger:

  This train is speeding out of the station, and the African-American community doesn't seem to be on it nearly with the representation that it deserves.

• Cat Wise:

  Daniel Weinberger is the head of the Lieber Institute for Brain Development in Baltimore. The train he's referring to is, once again, the revolution of precision medicine.

• Dr. Daniel Weinberger:

  This is how we store over 3,000 samples of human brain tissue. And this keeps expanding. This is a major enterprise.

• Cat Wise:

  This institute, which has an affiliation with Johns Hopkins, has built one of the world's largest collections of postmortem human brains devoted to understanding mental illness and brain development.

  So far, most of the brain research here and elsewhere has been centered on people with European ancestry. That's because their genomic code is newer and simpler than other groups, including people with African ancestry.

  Earlier this year, a study found that a full 10 percent of the African genome is missing from the famous reference human genome mapped by scientists at the turn of the century and that is widely used as a baseline for researchers.

• Dr. Daniel Weinberger:

  It was like a wakeup call. My, my, my, 10 percent missing? How is that possible that this has been overlooked to this degree?

• Cat Wise:

  The Lieber Institute has collected some 500 brains of African-Americans in recent years, but there hasn't been the funding to study them specifically. Weinberger says that lack of research is a big problem.

• Dr. Daniel Weinberger:

  We have known for a long time, for example, that many medicines used to treat psychiatric disorders are metabolized differently in African-Americans.

  And many of the studies have shown that they don't respond as well to some medicines, in part because they're metabolized differently. And unless we understand that, we're not going to be able to make the personalized insights that we can make so far in the Caucasian genome.

• Cat Wise:

  But going about this kind of research on the Johns Hopkins campus is sensitive business. This is, after all, the institution that harvested cells from Henrietta Lacks without her consent in the mid-1900s, creating an immortal cell line that is still used by researchers today.

  Events like that and the rumors that followed led to mistrust of the medical establishment which remains high today.

• Rev. Alvin C. Hathaway:

  Johns Hopkins has this kind of spirit hovering over it that you didn't want to walk by it at night, because they were using people for spare body parts.

• Cat Wise:

  That's Reverend Al Hathaway, senior pastor of the Union Baptist Church, and one of the most influential voices in the city of Baltimore. He was skeptical, too, of a group trying to collect brains.

• Rev. Alvin C. Hathaway:

  As I began to work with them, what I realized was that the funding is kind of slanted towards a European data set. So I said, "Well, wait a minute, that's not really biased. That's just accessibility"'

  And so I didn't see it as, like, something that was structurally wrong. I saw it as something that we could correct.

• Cat Wise:

  In collaboration with the Lieber Institute, Hathaway and a group of fellow Baltimore clergy members have created the first African-American Neuroscience Research Initiative. Their goal is to help the institute use the specimens already on hand to fill in genomic gaps and create a publicly accessible data set that would speed both research and medical innovation.

  But even as they push forward, all those involved in the project are proceeding carefully, knowing that science has been used in the past to emphasize racial differences in harmful ways and exploit minority communities.

  As more becomes known about genomic differences between racial groups, some are concerned that could happen again.

• Dr. Daniel Weinberger:

  No genome is without its advantages and its disadvantages. This is true of every genome. This is just a matter of identifying them and coming up with ways to make them less debilitating.

• Cat Wise:

  Back in California, George Ocampo is back on his feet with the support of his wife, Trisha.

• Woman:

  We held each other for a few moments, and then he stopped and said: "Trisha, look at me. It's OK. We're going to get through this. It's just another bump in the road."

• Cat Wise:

  More than three dozen friends and family members came out for a recent cancer fund-raising event.

• Men and Women:

  Team George!

• Cat Wise:

  With a hashtag on all of their backs #NoOneFightsAlone and the hope that research of the future will move closer to that goal as well.

  For the "PBS NewsHour," I'm Cat Wise in Hollister, California.