I know we are all good people, but most of novel science happened with methods that we would find totally unacceptable today, from lobotomizing people, to deafferenting cats, to sending dogs to space. If 23andme didnt have established a large user base, it would be impossible to get a comparably big database given today's regulations (and climate).
What I mean is you pay 23andme money, they showcase your genetics which, as I understand it, include lineage, risk of disease, etc. 23andme isn't akin to a blood panel in my mind. At least not at this point since they sell on other marketing aspects that are far more consumer oriented.
> I know we are all good people, but most of novel science happened with methods that we would find totally unacceptable today, from lobotomizing people, to deafferenting cats, to sending dogs to space. If 23andme didnt have established a large user base, it would be impossible to get a comparably big database given today's regulations (and climate).
I don't agree with this. You're conflating lobotomy and, again, a for profit company that is collecting a massive database of DNA as we speak and all of the use cases are not yet defined. There is a significant difference between scientific research and running a for profit company. If we can't agree the motives between those two things are different then that is the clear disconnect. Swap out your analogy with Google or Facebook. Are we all glad they have established a large user base? I'm not. And just like those companies it may be that you may think 23andme having your data today is a good thing but that could change quickly when your data is sold for different intentions later on. Do you agree you may not always hold that perspective? What if 23andme starts to sell data to insurance companies after they lobby away having to cover preexisting conditions and then buy your user data to deny you coverage?
As for the privacy concerns i have a bit different views. I think it s debateable whether DNA is intellectual property of its owner and whether it could be protected as such. Very few humans can claim that their DNA information is the output of their labor, and it is very highly shared among humans, so there should be a discussion to what extent genetic information should be subject to fair use. Having widely available open datasets would reduce the value of these big centralized databases.
And it 's not like they lock-in your data, you can export them to contribute to other studies if possible.
All UK Biobank participants were tested for blood pressure, bone mineral density, grip strength, BMI, etc. The last 200,000 participants underwent detailed tests of cognitive function [1].
23andMe asks customers for health information, but self-reports are not usually as reliable as the clinician-administered tests done in UK Biobank.