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I'm increasingly thinking that genome harvesting for profit is today's eugenics -- currently acceptable, but will become abhorrent.
The Illusion of Inclusion — The “All of Us” Research Program and Indigenous Peoples’ DNA | NEJM https://www.nejm.org/doi/full/10.1056/NEJMp1915987#.XyQBg27EUuw.twitter HT @cricketcrocker
The Illusion of Inclusion — The “All of Us” Research Program and Indigenous Peoples’ DNA | NEJM https://www.nejm.org/doi/full/10.1056/NEJMp1915987#.XyQBg27EUuw.twitter HT @cricketcrocker
I'm reading We Are Amphibians by RS Deece about the Huxley brothers, Julian and Aldous.
Julian H. was in many respects a wonderful humanitarian. But he was also a life-long eugenicist. How could someone so bright and principled embrace something so evil? https://www.ucpress.edu/book/9780520281523/we-are-amphibians#.XyQC-sswD_M.twitter
Julian H. was in many respects a wonderful humanitarian. But he was also a life-long eugenicist. How could someone so bright and principled embrace something so evil? https://www.ucpress.edu/book/9780520281523/we-are-amphibians#.XyQC-sswD_M.twitter
3/ He was not alone, as we know. Too many to mention, but TH Morgan, Margaret Sanger, Marie Stopes, Helen Keller, GB Shaw, Bertrand Russell, Teddy Roosevelt -- all proponents of eugenics. Seriously brilliant people, often doing great things for humanity. And eugenicists.
4/ My thought exercise recently has been "What is my blind spot? Where am I failing to see something that is mainstream, generally accepted, but will ultimately be seen as eugenics is today?"
I think it's possibly genome harvesting for profit. I could be wrong, but I'm worried.
I think it's possibly genome harvesting for profit. I could be wrong, but I'm worried.
5/ Remember that "profit" can be an R01 or a publication. This is not just a commercial sector misdeed, this applies equally in academia.
Some of the sequencing being performed by multinational companies in countries and populations looks like pure exploitation.
Biocolonialism.
Some of the sequencing being performed by multinational companies in countries and populations looks like pure exploitation.
Biocolonialism.
6/ What's the alternative? I'm increasingly drawn to the @midata_coop model in which the study participant owns their data, and controls its sharing.
Some kinks to be worked out -- who helps the participant understand the risk/benefit ratio when someone asks for your data?
Some kinks to be worked out -- who helps the participant understand the risk/benefit ratio when someone asks for your data?
7/ Also, as mentioned in the @NEJM article at the top of the thread, there needs to be clear return of value to the participant, population or country. Developing a $300K/year drug will only widen #HealthDisparities
The drug needs to be co-owned by the participants.
The drug needs to be co-owned by the participants.
8/ There's a model for that. The @CF_Foundation has provided the paradigm. https://www.bloomberg.com/news/features/2015-07-07/this-medical-charity-made-3-3-billion-from-a-single-pill
9/ Little-known precedent -- the @decodegenetics deal with Hoffman-La Roche to exploit the sequences of people in Iceland included the agreement that the Icelandic people would get drugs produced for free.
https://newscientist.com/article/mg16021633-300-selling-the-family-secrets/… (with comment by cousin Hank @HankGreelyLSJU)
https://newscientist.com/article/mg16021633-300-selling-the-family-secrets/… (with comment by cousin Hank @HankGreelyLSJU)
/10 As a genetics community, we need to recognise the self-interest in population sequencing, the now-obvious potential for exploitation of study participants, and develop principles that give 100% of the benefits of these initiatives to study participants.
