The Illusion of Inclusion — The “All of Us” Research Program and Indigenous Peoples’ DNA

Posted in Articles, Health/Medicine/Genetics, Media Archive, Native Americans/First Nation, United States on 2020-09-13 02:16Z by Steven

The Illusion of Inclusion — The “All of Us” Research Program and Indigenous Peoples’ DNA

The New England Journal of Medicine
Issue 383 (2020-07-30)
pages 411-413
DOI: 10.1056/NEJMp1915987

Keolu Fox, Ph.D.
University of California, San Diego

Raw data, including digital sequence information derived from human genomes, have in recent years emerged as a top global commodity. This shift is so new that experts are still evaluating what such information is worth in a global market. In 2018, the direct-to-consumer genetic-testing company 23andMe sold access to its database containing digital sequence information from approximately 5 million people to GlaxoSmithKline for $300 million. Earlier this year, 23andMe partnered with Almirall, a Spanish drug company that is using the information to develop a new antiinflammatory drug for autoimmune disorders. This move marks the first time that 23andMe has signed a deal to license a drug for development.

Eighty-eight percent of people included in large-scale studies of human genetic variation are of European ancestry, as are the majority of participants in clinical trials.1 Corporations such as Geisinger Health System, Regeneron Pharmaceuticals, AncestryDNA, and 23andMe have already mined genomic databases for the strongest genotype–phenotype associations. For the field to advance, a new approach is needed. There are many potential ways to improve existing databases, including “deep phenotyping,” which involves collecting precise measurements from blood panels, questionnaires, cognitive surveys, and other tests administered to research participants. But this approach is costly and physiologically and mentally burdensome for participants. Another approach is to expand existing biobanks by adding genetic information from populations whose genomes have not yet been sequenced — information that may offer opportunities for discovering globally rare but locally common population-specific variants, which could be useful for identifying new potential drug targets.

Many Indigenous populations have been geographically isolated for tens of thousands of years. Over time, these populations have developed adaptations to their environments that have left specific variant signatures in their genomes. As a result, the genomes of Indigenous peoples are a treasure trove of unexplored variation. Some of this variation will inevitably be identified by programs like the National Institutes of Health (NIH) “All of Us” research program. NIH leaders have committed to the idea that at least 50% of this program’s participants should be members of underrepresented minority populations, including U.S. Indigenous communities (Native Americans, Alaskan Natives, and Native Hawaiians), a decision that explicitly connects diversity with the program’s goal of promoting equal enjoyment of the future benefits of precision medicine.

But there are reasons to believe that this promise may be an illusion. Previous government-funded, large-scale human genome sequencing efforts, such as the Human Genome Diversity Project, the International HapMap Project, and the 1000 Genomes Project, provide examples of the ways in which open-source data have been commodified in the past. These initiatives, which promised unrestricted, open access to data on population-specific biomarkers, ultimately enabled the generation of nearly a billion dollars’ worth of profits by pharmaceutical and ancestry-testing companies. If the All of Us program uses the same unrestricted data-access and sharing protocols, there will be no built-in mechanisms to protect against the commodification of Indigenous peoples’ DNA…

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Panel Discussion: Social Inequalities in Health

Posted in Health/Medicine/Genetics, Media Archive, Politics/Public Policy, Social Science, United States, Videos on 2015-12-23 18:05Z by Steven

Panel Discussion: Social Inequalities in Health

National Institutes of Health (U.S.). Office of Behavioral and Social Sciences Research
Bethesda, Maryland
2015-05-08, 14:00 EDT (Local Time)

The NIH Office of Behavioral and Social Science Research will host the Panel Discussion: Social Inequalities in Health, on May 8, 2015, at the NIH Campus, as part of the 2014-2015 BSSR Lecture Series to promote open and engaged discussion about cutting edge research in the behavioral and social sciences field.

Panelists:


Watch or download the video (01:56:15) here.

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U.S. to Collect Genetic Data to Hone Care

Posted in Arts, Barack Obama, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, United States on 2015-01-31 23:23Z by Steven

U.S. to Collect Genetic Data to Hone Care

The New York Times
2015-01-30

Robert Pear, Washington Correspondent

WASHINGTON — Saying that “the possibilities are boundless,” President Obama on Friday announced a major biomedical research initiative, including plans to collect genetic data on one million Americans so scientists could develop drugs and treatments tailored to the characteristics of individual patients.

Dr. Francis S. Collins, the director of the National Institutes of Health, said the studies would help doctors decide which treatments would work best for which patients.

White House officials said the “precision medicine initiative” would begin with a down payment of $215 million in the president’s budget request for the fiscal year that starts Oct. 1.

Precision medicine, also known as personalized or individualized medicine, “gives us one of the greatest opportunities for new medical breakthroughs that we have ever seen,” Mr. Obama said at a White House event attended by patients’ advocates, researchers, and drug and biotechnology company executives.

Among those in the audience was Senator Lamar Alexander, Republican of Tennessee and chairman of the Senate health committee, who said he intended to work with the president on the issue.

Mr. Obama said the new initiative could save lives, create jobs, foster new industries and help people overcome “the accidents and circumstances of our birth.”

“If we’re born with a particular disease, or a particular genetic makeup that makes us more vulnerable to something, that’s not our destiny, that’s not our fate,” Mr. Obama said. “We can remake it. That’s who we are as Americans, and that’s the power of scientific discovery.”…

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