(Undark) – One person’s DNA became the centerpiece of a genetic sequence used by biologists the world over. Did he agree to that?

To piece the story together, Undark reviewed more than 100 emails, letters, and other digital documents housed within the History of Genomics Archive at the National Human Genome Research Institute. The documents, provided to Undark through an institutional research collaboration agreement, reveal that the project’s sourcing of human genetic material was more ethically fraught than official publications portrayed it to be, and included DNA harvested from a cadaver, and from one of the project’s own scientists. The records, along with interviews with many of the project’s central figures and with experts in law and bioethics, paint a picture in which high-ranking project officials — constrained by their own experimental protocols and accelerated timelines — veered from their guiding principles and pushed the boundaries of informed consent. (Read More)