That’s right, Ancestry.com and 23andMe can and do sell your DNA to pharmaceutical companies for testing and research. Pharmaceutical giant GlaxoSmithKline announced it was acquiring a $300 million stake in 23andMe.
As part of a four-year deal between the two companies, GlaxoSmithKline will comb 23andMe’s genetic data to look for new drugs to develop, also referred to as drug targets. It will also use the genetic data to inform how patients are selected for clinical trials.
If that news has you thinking about how your own genetic material is being used for research, know that though the DNA you submit to these services is ostensibly anonymized, leaks can happen, and privacy advocates say that such incidents could allow your data to find its way elsewhere, perhaps without your knowledge.
This raises bioethical issues as well as privacy issues. If you’re reading this you should be concerned.
“The very set-up of this venture” – which automatically pulls from all customer data and requires individuals to opt-out if they don’t want to participate – “suggests that its initiators are not quite serious about 23andMe’s customers’ informed consent,” Queen’s University professor of bioethics Udo Schuklenk told Business Insider by email.
But deleting your genetic data from these platforms can be a surprisingly tricky process.
The core service provided by most commercial genetic tests is built on the extraction of your DNA from your saliva- that’s how you get the information about your health or ancestry.
After registering your spit sample online with 23andMe, you will be asked whether you’d like your saliva to be stored or discarded. But you are not asked the same question about your raw genetic data, the DNA extracted from your saliva.
If you want more information about how you can delete your account and/or protect your DNA sample from being stored and used for research, check out the full story at Business Insider.