23 & Me Gets Into Clinical Trial Recruitment Testing the Privacy of Consumers
[Thursday, October 3, 2019]

Genetic tests such as those conducted by “23 and Me” reveal some of the most intimate health-related information about a consumer. And now 23 and Me has decided to use this information to pitch clinical trials to its consumers which should worry any privacy conscious consumer. 23 and Me is the biggest provider of direct to consumer genetic diagnostic tests in the US, and perhaps in the World. With millions of customer records in its database, 23 and Me holds information on one of the largest pools of otherwise healthy individuals with known genetic markers making them attractive targets for clinical trial recruitment campaigns. And this is not the first time it has done that. Over the last few years, 23 and Me has monetized its database similarly with other multi-million-dollar deals. And if you are one of those customers that do not appreciate the company using your personal information for commercial gains, there is nothing you can do about it. Legally, 23 and Me is well protected from angry customers. It requires anyone buying its test to agree to a 21-page “Terms of Service” and a 24-page “Privacy Statement” which pretty much allows the company to use the information generated in most ways it likes. To be fair to 23 and Me, many of its customers may like to know of any clinical trials or new medical products that may benefit them, but there must be many others who may not accept the apparent invasion of their privacy. The hard truth is that 23 and Me is likely being followed by other similar providers trying to get secondary and tertiary financial benefits from the data they hold from their customers. This used to be a trend for consumer good companies trying to pitch products based on purchasing habits. The extension of the model to healthcare research presents a new incentive and an ethical minefield that needs a suitable discussion.