Apple’s promotional video for ResearchKit
Silicon Valley start-up 23andMe, as well as internet giants Google, Facebook and Apple, are competing to create databases which can be made available to medical researchers. But bioethicists are asking whether participants’ privacy will be respected and whether they understand what they have consented to.
23andMe, whose CEO is Anne Wojcicki, the former wife of Google co-founder Sergey Brin, is the leader in the new field of collecting health and genetic data on-line. For the past two years the company has been hampered by an FDA ban on providing direct-to-consumer genetic tests. But in October the FDA relaxed these restrictions, giving 23andMe’s plans for personal genome testing a substantial boost.
The San Francisco Chronicle describes the situation:
Most medical studies take months or years to solicit enough volunteers. But 23andMe puts the genetic information of 700,000 people at researchers’ fingertips, allowing medical studies to be fast-tracked and new treatments to make their way into hospitals sooner, experts say, giving patients with chronic diseases a better quality of life.
“Instead of actually having to do clinical trials the old-fashioned way, we can enable researchers to get their answers instantaneously,” Wojcicki said in an interview with this newspaper. “And they pay us for that.”
But some experts worry 23andMe users have no idea where their own genetic information will end up. Because the company is relying on data sales to become profitable — selling $99 home genetic testing kits doesn’t pull in the big-dollar revenue — 23andMe may disseminate consumers’ genetic information not only to government agencies and research institutions, say legal and bioethics experts, but also to big pharmaceutical companies, marketers and advertisers.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.