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Addressing the ‘trust factor’: Researchers tackle health disparities using genetics

Quenton Tompkins’ family tree is deeply rooted in rural McCormick County, S.C. His grandfather was a sharecropper in McCormick. His mother, who turns 88 this month, grew up as the youngest of 24 children. Branches of aunts, uncles and cousins now stretch from Florida to Chicago.

And although Tompkins, 48, has heard plenty of stories, his family holds its secrets, too.

Quenton Tompkins

He didn’t know until he was an adult that his grandfather had died of leukemia. And he’s still unsure if his father’s bout with prostate cancer runs in the family. Tompkins’ mother and her siblings have dealt with a range of health issues, including diabetes, heart attacks and strokes, but he still doesn’t know what killed his grandmother more than 70 years ago.

“Those are questions I go through personally,” said Tompkins, a lobbyist for the Medical University of South Carolina. “There’s another side to knowing where you come from.”

Twenty-two years ago, President Bill Clinton announced the completion of a “draft version” of the Human Genome Project, a breakthrough he described as “the language in which God created life.” He predicted that scientists, armed with genetic discoveries, would find cures for Alzheimer’s disease, cancer, Parkinson’s disease, and diabetes in the coming years.

Clinton’s prediction, of course, hasn’t yet come to pass. But researchers in Charleston are hopeful that a large genetics research project underway across South Carolina may help scientists address some of the state’s persistent health disparities, which disproportionately impact its Black residents and regularly rank among the nation’s worst.

The university health system intends to enroll 100,000 of South Carolina’s 5 million residents in genetic testing over the next four years in hopes of better understanding how DNA influences health. Researchers also want to recruit participants who reflect the diversity of the state’s population.

It’s an ambitious goal. With nearly 27% of South Carolina residents identifying as Black or African American, the MUSC genetics research project, called “In Our DNA SC,” would — if successful — accomplish something most other genetics research projects have failed to do. Historically, diverse participation in this type of research has been very low.

“There’s a trust factor. It’s plain and simple,” said Tompkins, who is developing an outreach program for the project.

Henrietta Lacks

He referenced Henrietta Lacks, a Black woman in Baltimore whose cells were used without her or her family’s knowledge for research purposes by doctors at Johns Hopkins University in the 1950s; and the Tuskegee syphilis study, conducted over nearly 40 years starting in the 1930s. Researchers deceived hundreds of Black men enrolled in the study, telling them they were being treated for syphilis when, in fact, they were left untreated, even after penicillin became widely available.

Herman Shaw (left), who survived the Tuskegee Syphillis Study, was 94 when he met with then-President Bill Clinton on May 16, 1997. Shaw died in 1999.

“Those are still fresh in many people’s minds,” Tompkins said. “We’ve come a long way from those stories — it doesn’t dismiss what happened — but there are a lot more controls and oversight in place to ward those things off from happening again.”

But it’s not only history feeding this distrust. Bias and racism evident in medicine today contribute to the problem.

Diversity in genetics research is so low that approximately 90% of participants in projects launched since the first sequencing of the human genome have been individuals of European descent or those who identify as white, said Dr. Shoa Clarke, a pediatric cardiologist and geneticist at Stanford University.

These numbers affect real-life health care. Clarke and others published research last year showing that a DNA-based tool used to assess a patient’s risk of developing high cholesterol works reliably well only when administered to those of Northern European descent. That’s because the tool was developed using information from genetic “bio-banks” largely made up of DNA from white people. And aside from a large DNA bank compiled by the Department of Veterans Affairs, this is generally the norm.

Human beings, regardless of race, are more than 99% genetically identical, but small variations and mutations passed down through generations can influence health outcomes in huge ways, Clarke explained.

“Genetics is not the cause of health disparities,” he said. “But as we move toward using genetics in clinical settings, it’s very possible they could create new disparities.”

This article is published from Kaiser Health News through a Creative Commons license.

Staff

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