Federal Research Program Picks Kansas City To Help Diversify Genetic Data | KCUR

Federal Research Program Picks Kansas City To Help Diversify Genetic Data

May 6, 2018

A day-long event Sunday at Kansas City’s Union Station helped launch “All of Us,” a new nationwide research initiative from the National Institutes of Health.

The program’s goal is to collect genetic data from one million people from a wide variety of races, ethnicities and backgrounds.

Kansas City, Missouri, was one of seven cities chosen for the launch of "All of Us," and Tom Curran, executive director of Children's Mercy Research Institute, said that was no mistake. 

"In a sense, Kansas City is leading the way by sharing information and engaging in collaborations," said Curran. "I think we'll play a significant role in moving this agenda forward."

Charity group Delta Research & Educational Foundation partnered with NIH to back the new program. DERF President Carolyn Lewis said All of Us is an opportunity to close health gaps.

"In the African-American community, we constantly hear we are disproportionally impacted by chronic illness such as cardiovascular disease, hypertension, diabetes, Alzheimer's disease... The list goes on and on and on," Lewis said. "To understand why this scenario is our reality, research must be conducted on diverse people, and it must be precise."

But, Lewis says, to make this work, the health research community needs to rebuild trust with communities of color.

There's an extensive history of researchers taking advantage of people of color. In the Tuskegee Study in the mid-1900s, researchers took blood from black men but failed to properly inform or treat them if they had syphilis. Cells taken from Henrietta Lacks in 1951, without her knowledge or consent, became instrumental to decades of cancer research.

Curran says that's largely why, over time, clinical trials have become homogenous, tending to draw "affluent, well-educated and genetically less diverse people." Bringing more diversity will help geneticists learn about the influences of DNA and environmental factors on illnesses. It could also help medical researchers customize and individualize medicine.

Corey Melson learned about "All of Us" at Union Station Sunday. She said she likes the idea of the research effort.

"I think it will help decrease a lot of the unneeded hate we still have," Melson said. "It would help save so many more lives because we are more intertwined than we think we are."

By 4 p.m. Sunday, NIH staff at Union Station created accounts for 136 people interested in being part of the genetic database. 

Andrea Tudhope is a reporter for KCUR 89.3. Email her at andreat@kcur.org, and follow her on Twitter @_tudhope.