Geneticists Should Offer Data to Participants

November 1, 2016

(Nature) – As a human-genetics researcher, I analyse the DNA of thousands of anonymous strangers. Earlier this year, I got to experience the other side of a consent form — and was left disappointed. When another research group asked me to donate my own genetic material for their whole-genome sequencing project, I asked in exchange for access to my raw data — to explore, to play with and just to have on file. Not surprisingly, my request was refused: the status quo for biomedical and genetic studies is not to return individual-level data to participants.