In a move that likely has all kinds of downstream implications, the genetic testing company 23andMe has announced it is working with a partner to improve clinical trial recruiting, according to a recent article in the online publication STAT.
23andMe already describes its research platform as “currently the world’s largest consented, recontactable database for genetic research.” Now the company is working with a partner, TrialSpark, to help recruit subjects for clinical trials.
Does this mark another step in the evolution of how we consider privacy? 23andMe’s database of genetic data can be mined for potential therapeutic targets, thereby finding people who might be eligible for study participation. If they’re being studied for a condition they didn’t previously know they’re at risk for, would inviting them to join a study be distressing? And while 23andMe describes its database as “consented,” what, exactly, did contributors consent to? Anything at all for all time?
Please take a look at the articles at the links (and also at those at the links embedded into the articles).