The dubious consent question at the heart of the Human Genome Project : Short Wave – NPR

Posted: July 20, 2024 at 4:22 am

Launched in 1990, a major goal of the Human Genome Project was to sequence the human genome as fully as possible. In 2003, project scientists unveiled a genome sequence that accounted for over 90% of the human genome as complete as possible for the technology of the time. Darryl Leja, NHGRI/Flickr hide caption

Launched in 1990, a major goal of the Human Genome Project was to sequence the human genome as fully as possible. In 2003, project scientists unveiled a genome sequence that accounted for over 90% of the human genome as complete as possible for the technology of the time.

The Human Genome Project was a massive undertaking that took more than a decade and billions of dollars to complete. For it, scientists collected DNA samples from anonymous volunteers who were told the final project would be a mosaic of DNA. Instead, over two-thirds of the DNA comes from one person: RP11. No one ever told him. Science journalist Ashley Smart talks to host Emily Kwong about his recent investigation into the decision to make RP11 the major donor and why unearthing this history matters to genetics today.

Read Ashley's full article in Undark Magazine here.

Curious about other biology stories? Email us at shortwave@npr.org.

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Today's episode was produced by Berly McCoy and edited by Rebecca Ramirez. They both checked the facts. Kwesi Lee was the audio engineer.

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The dubious consent question at the heart of the Human Genome Project : Short Wave - NPR

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