4 ms·
Somebody needs to get on top of appropriate encryption and anonymization for this area. After all, there's nothing I want more private than my DNA sequence (aga
by msg 17y ago
Somebody needs to get on top of appropriate encryption and anonymization for this area. After all, there's nothing I want more private than my DNA sequence (against health insurers, if no one else), and nothing that is less anonymous than something that can identify me uniquely out of all the world.
At the same time, I want my doctors to have access for testing before they begin a course of treatment.
I would also like to participate in studies that use my genome for others' benefit and data mine it, but appropriate safeguards and protocols will be a must. I want a way to share part of my sequence, to compare one sequence to another, or to perform a test on the sequence, and be secure doing so.
- abstractbill 17y agoI take a very different approach: When I have it, I'll gladly share my entire genome with anyone who wants it (after all, with the rapid decrease in price, and the ease of collecting a sample from me without my knowledge, any sufficiently determined person won't even have to ask my permission in a couple of decades). But, I'll always be very strongly in favor of legislation that prevents entities like health insurance companies from using my genome against me.
- msg 17y agoI don't think your genome going public is mostly in danger from nefarious ne'er-do-wells collecting your skin. But there will be mass data breaches from stolen laptops or social engineering scams at these sequencing/medical record companies. Past experience tells us that the data will not be secured properly. So if you care about it enough, the right solution is a more federated solution where the DNA owner controls the key, like PGP.
- abstractbill 17y agoInsurance companies have been known to hire private investigators to check up on their customers. If it was legal and cheap enough, why wouldn't they give genetic material collectors? In any case, I agree with you - there will be mass data breaches, so I prefer to just assume all genome data will be essentially public, and then figure out what to do from there.
- dejb 17y ago> But, I'll always be very strongly in favor of legislation that prevents entities like health insurance companies from using my genome against me. Would you also want legislation to prevent them from using it in your favor as well? In all likelihood those who can prove they are 'good risks' will find a way to benefit from this.
- rms 17y agoIt's hard to keep it anonymous when you shed it everywhere you go, and it's not illegal for people to pick up those particles, analyze them, and hold it against you in a court of law.
- steveplace 17y agoThere's definitely some movements out there for a genome collaboration project: http://hplusmagazine.com/articles/health-medicine/open-source-medicine-next-insanely-great-thing http://hplusmagazine.com/articles/health-medicine/open-sourc...