Embedded in our genetic code is all kinds of sensitive data that could be compromising in the wrong hands. Without genetic privacy protections, the information stored in our genes might be used to discriminate against us or send us targeted ads. For these reasons, some have said we should skip out on consumer DNA tests if we value our privacy. Last week, after the FDA gave DNA testing company 23andMe the greenlight to offer consumers disease risk assessments, there was a new wave of warnings.
“The product isn’t really a kit...the product is you,” Popular Science wrote after the announcement. Others have speculated that the company’s long-term goals include selling your data for advertising purposes.
Let’s be clear here. 23andMe definitely is selling your data to third party companies, research institutions and nonprofits. But it is not selling your genetic data to those entities in order for them to sell you things. It is selling de-identified, aggregate data for research, if you give them consent.
“We have a lot of research partnerships,” Kate Black, the company’s head of privacy, told Gizmodo. “Some of these include financial remuneration.”
“There is no advertising link to any of our research,” she said. “We don’t use genetic information for advertising. Or any sensitive information. It’s a pretty black and white line.”
In cases where research is being done on a rare condition that affects just a few thousand customers, Black said, the company will reach out and request additional consent beyond the standard research consent consumers agree to when they take their test. In all cases, the data is anonymized. (Though to be fair, it’s debatable how anonymous that data really is. In one case, researchers were able to find out a man’s last name using only the short repeats on his Y chromosome and access to a genealogy database.)
It is true that 23andMe’s big moneymaker is consumer data, not consumer DNA testing kits. Black said that more than 80 percent of 23andMe’s two million-plus customers consent to having their data used for research. That’s an awful lot of data up for sale.
There are many reasons to be wary of genetic testing. They might reveal hard-to-hear information about your ancestry or disease-risk profile. If you’ve done a test, despite genetic privacy laws, life insurers in can request genetic testing information before granting coverage. A bill in Congress right now threatens to create even more loopholes enabling genetic discrimination.
And 23andMe does use other customer information to help target advertising and attract more customers.
But 23andMe is not using your genetic information in an Orwellian ploy to help companies sell you drugs or shoes your DNA suggests you might want. At least, not yet.