this post was submitted on 17 Nov 2025
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I know my institution wouldn't allow this without informed consent from himself pre-death or legally responsible family members. Plus you have to be able to withdraw consent at any time and we have to destroy all data, including sequencing analysis, upon request. Not sure how that affects published data but we'd have to strip it out of any data repositories the publications may point to as well.
I haven't really read up on the topic since the early days of the human genome project - has there been any attempt to round up and remove all of the sequencing data obtained from indigenous people under dubious consent or disclosure conditions or is the intent of these policies more "going forward we'll keep things above board"?