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The dubious consent question at the heart of the Human Genome Project

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
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.

Copyright 2024 NPR

Emily Kwong (she/her) is the reporter for NPR's daily science podcast, Short Wave. The podcast explores new discoveries, everyday mysteries and the science behind the headlines — all in about 10 minutes, Monday through Friday.
Berly McCoy
Kimberly (Berly) McCoy (she/her) is an assistant producer for NPR's science podcast, Short Wave. The podcast tells stories about science and scientists, in all the forms they take.
Rebecca Ramirez (she/her) is the founding producer of NPR's daily science podcast, Short Wave. It's a meditation in how to be a Swiss Army Knife, in that it involves a little of everything — background research, finding and booking sources, interviewing guests, writing, cutting the tape, editing, scoring ... you get the idea.
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