4 ms·
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,
by a_bonobo 8y ago
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/ https://www.23andme.com/publications/for-scientists/
- victor106 8y agoI 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
- toomuchtodo 8y agoI 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.
- darpa_escapee 8y agoI don't see how it's unrealistic. People are paid to participate in studies all of the time.
- a_bonobo 8y agoI 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.
- toomuchtodo 8y agoCorrect. Your fee just covers the genotyping on the Ilumina chip. Disclaimer: Interviewed at 23andme about a decade ago.
- darpa_escapee 8y agoI'm almost certain similar services exist around the same price point, which don't apply the SaaS model of privacy to user data.
- cryoshon 8y 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.