Jonathan E LoTempio, Christopher R Donohue, Jonathan D Moreno, Robert Cook-Deegan
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Ethics choices during the Human Genome Project reflected their policy world, not ours.
Since human genomic data produced in the 1990s are still a significant part of the reference genome, decades-old decisions pertinent to the creation of these data persist. Here, we discuss how historical documents illustrate the 1990s policy and legal environment and how they affected ethical choices in the Human Genome Project (HGP). These documents inform current controversies about informed consent and how IRBs review similar protocols today. Finally, we discuss how this informs active work in large reference pangenome efforts.
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