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Comment by nnutter | Hacker News Reader

Can you explain how one gives consent? Is it opt-in or opt-out? Is there any judgemental language to try to convince people to consent?

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It is opt-in.

23andMe has done similar things before, then they contacted potential candidates and asked for opt-in specifically for that project. For example, if they'd run a prostate cancer study with some university they'd contact middle-aged men and ask whether they want to be involved in a prostate cancer study. Language would not be neutral, something like 'Do you want to help stop this cancer?'

Here are the papers 23andMe has published using their data: https://www.23andme.com/publications/for-scientists/

I would not mind opting in as long as the all the financial benefits don’t go to the drug company and 23. The person sharing and/or the society should get a piece of the pie

I don’t think it’s realistic to expect a few dollars for your contribution.

I’d be happy just knowing my 23andme profile is helping develop a drug that otherwise wouldn’t have existed.

I don't see how it's unrealistic. People are paid to participate in studies all of the time.

I think a large part why 23andMe is so cheap (<$100) is that the worth of your data is planned in, but I haven't seen anything confirming that.

I'm almost certain similar services exist around the same price point, which don't apply the SaaS model of privacy to user data.

Correct. Your fee just covers the genotyping on the Ilumina chip.

Disclaimer: Interviewed at 23andme about a decade ago.

>Language would not be neutral, something like 'Do you want to help stop this cancer?'

this more or less violates 100% of the informed consent laws which are the standard for all investigations using people's genetic information in a clinical trial.

even with peoples' consent, this is egregiously bad. there is an established ethical standard which 23andme has decided to throw into the faces of their customers.

The language is quite neutral and explains pretty clearly what opting in means.

The research consent page is separated into about 6-7 paragraphs that explain the various ways it could be used, and what to consider.

It's not coersive in either direction.

I know this because I used to consent and after this announcement just went to remove my consent.

To 23andMe's credit, I did this because they sent me an email explaining this new relationship and reminding me I had consented to the previous setup but now should think about whether I still consented in light of the new partnership.

I felt it was all above board.

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