Seemingly overnight, the kingpins of the direct-to-consumer genetic testing (DTC-GT) industry shifted their focus from exploring their customers’ DNA to commodifying it. Companies like Ancestry or 23andMe that were once exclusively known as mere sources of “infotainment” now regularly sell consenting customers’ genetic data to pharmaceutical researchers or use it to develop drugs of their own. To gain these customers’ consent, both firms employ a series of long, complex clickwrap contracts that largely fail to apprise their readers of the potential risks of sharing their genetic data. Nor do these agreements provide any form of compensation to those consumers whose data ultimately facilitates the development of a new, profitable drug.
Understandably, the relative autonomy major DTC-GT firms wield over their customers’ genetic information—and the manner in which that autonomy is gained—raises serious privacy and bioethical concerns. More directly, it reflects a stark lack of federal oversight of the data management and storage practices of the DTC-GT industry as a whole. The emerging patchwork of state consumer privacy laws—while certainly more robust than any existing federal legislation—likewise falls short in fully protecting the privacy and dignitary interests of the DTC-GT consumers whose genetic data is shared and mined for profit.
This is not to say that DTC-GT consumers should be uniformly prohibited from contributing their genetic data to medicinal research. Such behavior should be encouraged to the extent this information can be transferred and stored securely. Nevertheless, the current exploitation of consumer data by major DTC-GT firms may, over the long term, inhibit medicinal progress by undermining demand for genetic testing and, thus, the pool of genetic data available for research. Accordingly, consumers and researchers alike would benefit from a more secure and equitable method of exchanging genetic information.
This Note argues that the recent advent of “blockchain genomics”—a form of exchange that allows consumers to securely loan out their genetic information for research purposes in return for compensation—fits that bill. With mainstream DTC-GT firms unlikely to adopt such a system and no legislative solution on the horizon, this Note further suggests a role for the FTC, the country’s de facto privacy regulator, to nudge major DTC-GT firms in that direction by exercising various tools of its soft regulatory authority.
Envisioning the FTC as a Facilitator of Blockchain Technology Adoption in the Direct-to-Consumer Genetic Testing Industry,
23 Vanderbilt Journal of Entertainment and Technology Law
Available at: https://scholarship.law.vanderbilt.edu/jetlaw/vol23/iss3/6