DOAJ Open Access 2025

Ethics choices during the Human Genome Project reflected their policy world, not ours

Jonathan E. LoTempio, Jr. Christopher R. Donohue Jonathan D. Moreno Robert Cook-Deegan

Abstrak

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 Here, we discuss how historical documents illustrate the 1990s policy and legal environment and how they affected ethical choices in the Human Genome Project (HGP).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.

Topik & Kata Kunci

Genetics Internal medicine

Penulis (4)

Jonathan E. LoTempio, Jr.

Christopher R. Donohue

Jonathan D. Moreno

Robert Cook-Deegan

Format Sitasi

APA MLA BibTeX

Jr., J.E.L., Donohue, C.R., Moreno, J.D., Cook-Deegan, R. (2025). Ethics choices during the Human Genome Project reflected their policy world, not ours. https://doi.org/10.1016/j.xgen.2025.100841

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Informasi Jurnal

Tahun Terbit: 2025
Sumber Database: DOAJ
DOI: 10.1016/j.xgen.2025.100841
Akses: Open Access ✓