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Massive project aimed at diversifying genetic data reports first results

ARI SHAPIRO, HOST:

A big federal study aimed at reducing racial disparities in genetic research has released the program's first major trove of results. The findings are being welcomed for providing a wealth of potentially valuable data, but the project is also raising some concerns. NPR health correspondent Rob Stein reports.

ROB STEIN, BYLINE: The program is called All of Us, and the goal is to solve a long-standing problem in genetic research. Most of the people who donate their DNA to help find better genetic tests and precision drugs are white. Dr. Joshua Denny runs the All of Us program at the National Institutes of Health.

JOSHUA DENNY: Most research has not been representative of our country or the world. Most research has focused on people who were of European genetic ancestry or would be self-identified as white. And that means there's a real inequity in past research. We don't understand how drugs work well in certain populations. We don't understand the causes of disease for many populations.

STEIN: The project ultimately plans to collect detailed health information from more than 1 million people in the U.S., including samples of their DNA. And for the first time, the program has unveiled the biggest set of results yet - the complete genetic sequences of 245,000 volunteers.

DENNY: What's really exciting about this is that nearly half of those participants are of diverse race or ethnicity. I think this is a huge deal.

STEIN: And researchers found a wealth of genetic diversity.

DENNY: We found more than a billion genetic points of variation in those genomes. Two hundred seventy-five million variants that we found have never been seen before. Most of that variation won't have an impact on health, but some of it will. And we will have the power to start uncovering those differences about health that will be relevant, really, maybe for the first time to all populations.

STEIN: But some researchers have concerns about projects like All of Us. One is that this kind of research may reinforce a misleading idea that a person's genes play a bigger role in determining their health than they really do. James Tabery is a bioethicist at the University of Utah.

JAMES TABERY: Any effort to combat inequality and health disparities in society, I think, is a good one. But when we're talking about health disparities, whether it's Black babies at two or more times the risk of infant mortality than white babies or sky-high rates of diabetes in Indigenous communities, higher rates of asthma in Hispanic communities, we know where the causes of those problems are. And those are in our environment, not in our genomes.

STEIN: Some also worry that instead of helping alleviate racial and ethnic disparities, the project could kind of backfire by inadvertently reinforcing the false idea that racial differences are based on genetics. In fact, race is a social category, not a biological one. Michael Eisen is a molecular and cell biologist at the University of California Berkeley.

MICHAEL EISEN: If you put forward the idea that different racial groups need their own genetics projects in order to understand their biology, you've basically accepted one of the tenets of scientific racism - that races are sufficiently genetically distinct from each other as to be distinct biological entities.

STEIN: Denny disputes those criticisms. He notes the NIH's All of Us project is collecting lots of non-genetic data, too.

DENNY: It really is about lifestyle, the environment, behaviors as well as genetics. You know, it's about ZIP code and genetic code and all the factors that go in between.

STEIN: And while genes don't explain all health problems, Denny says DNA can play an important role worth exploring equally among everyone. Rob Stein, NPR News.

(SOUNDBITE OF MASEGO SONG, "YOU NEVER VISIT ME") Transcript provided by NPR, Copyright NPR.

NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

Rob Stein is a correspondent and senior editor on NPR's science desk.