Thread by @rossamcmahon

Kári Stefánsson was a director of GMI until last September. GMI has numerous overlaps with DeCODE Genetics, the company he founded in Iceland. He thinks medical privacy is not just overrated, but "morally unacceptable".

spectrum.ieee.org/biomedical/eth…

"I think it is completely unacceptable that you could demand service from the health care system at the same time as you refuse to have your information used to make discoveries."

Wow.

He does talk about data security in that Q&A, and elsewhere talks about the importance of protecting the data. But that is hard to square with the attitudes quoted above.

the-scientist.com/profile/master…

It is one thing when public institutions do or lead this kind of research, so long as they still comply with the rules. But don't be fooled by the overt altruism - DNA biobanks are a "goldmine" after all.

cnbc.com/2017/04/06/ice…

DeCODE was bankrupt in 2009 but has "rebounded" thanks to private funding. With similar sources to those that have pumped hundreds of millions into GMI.

Fascinating encounter between Dave Eggers & Stefánsson.

“When in history has biomedical information ever been used to harm anyone? When?”

grapevine.is/mag/articles/2…

Stefánsson evidently annoyed that Eggers won't just hand over his DNA and let him sequence it.

“Dave, you have children, right? You owe it to your children to get your DNA analyzed by me.”

“Ok, you’ve crossed a line.”

“I have not.”

“You have. I forgive you. But’s that’s crossing a line.”

I would not trust this person with my DNA.