The FTC Should Safeguard Our Genetic Privacy
It seems that millions of people will wake up Christmas morning to find at-home genetic testing kits in their stockings. Between Black Friday and Cyber Monday alone, AncestryDNA sold over a million of these spit-in-the-tube tests. And 23andMe offered $100 savings on its kits over Black Friday to entice customers.
These tests have steadily grown in popularity in the last few years. The offerings range from serious and scientific, to merely entertaining or plain useless. From well-known companies like 23andMe, consumers can buy tests to explore their genetic ancestry or discover their risk of developing certain diseases like Parkinson’s disease. While online retailer Helix offers a range of apps from which users can choose, from DNA diet apps to scarves bedecked with your genome to DNA-based wine recommendations.
Unsurprisingly, there have been criticisms and complaints lodged against companies with control over vast amounts of personal, genetic information. One high profile complaint came from Senator Charles Schumer of New York in a news conference just after Thanksgiving. Senator Schumer expressed concern that consumers were unknowingly allowing their personal data to be accessed by unauthorized third parties when they turn over that data to companies selling testing kits.
Privacy and accuracy have long been concerns related to this technology, and rightly so. Our genome is the most personal information that we possess; it is literally the blueprint that makes us, us. We do not allow banks to spread our financial information around at will, and neither should sequencing companies escape accountability for reckless behavior.
And yet, we must not choke out those legitimate companies in this space. Direct-to-consumer genetic tests, especially those that seek to inform users about possible present and future health concerns, offer great benefits. Cardiologist Dr. Eric Topol, in his book The Patient Will See You Now, recounts the story of Joshua Osborne, a fourteen-year-old suffering continuous seizures. Doctors were unable to determine the cause of his malady until they used a genetic sequencing test. They determined that a brain infection brought on by a rare bacteria was at the root of the young man’s illness, and were able to prescribe the correct antibiotics to treat the condition. While current DTC genetic tests only screen for a limited number of abnormal genes linked to specific conditions, subsequent, more powerful, iterations could lead to more stories like Joshua’s.
Additionally, these DTC tests offer consumers a way to access their own genomic data at a reasonable price from the comfort of their living room whenever they choose. Topol notes that for much of their history doctors have been a kind of priesthood, the sole keepers of all medical knowledge. Companies like 23andMe, which was founded to help customers “access, understand and benefit” from their own genomic information, are changing that dynamic and empowering patients to own their data.
This prospect of patient ownership and empowerment makes allegations of unauthorized third party access all the more concerning. Senator Schumer noted that companies offering DTC genetic tests need “safeguards” and called on the Federal Trade Commission to investigate whether these companies have “clear, fair privacy policies.” I actually agree with Senator Schumer and support the FTC policing these companies.
The FTC is the official government champion of American consumers. The dual mission of the agency is to “protect consumers and promote competition.” The agency has the power to sue companies or individuals who employ “unfair, deceptive or fraudulent practices in the marketplace.” For almost twenty years, the agency has protected consumers’ online privacy and enforced laws like the Children’s Online Privacy Protection Act. Extending the FTC’s authority to companies like 23andMe that have a strong online presence makes sense.
By giving the FTC jurisdiction and allowing the agency some discretion, problems of unseen regulatory costs can be avoided. Piling on regulation after regulation halts innovation in its tracks. In 2013, the Food and Drug Administration banned 23andMe from marketing their disease screening genetic tests and waited three years to give the company the green light to offer essentially the same product.
It is impossible to determine how much better these tests could be today if the company was allowed to continue development of its products in the interim. Perhaps we could have had more stories of lives saved like that of Joshua.
