Privacy Problems of Direct-to-Consumer Genetic Testing | DNA Tests

Privacy Problems of Direct-to-Consumer Genetic Testing | DNA Tests

January 11, 2022 0 By administrator

Our findings fall into three main categories: expansive permissions granted to companies regarding DNA (and non-DNA) data when consumers opt in to research, overcollection of non-DNA data, and oversharing of non-DNA data.

Expansive Research Permissions
The five companies whose apps we evaluated say they provide customers the option to opt into “research” conducted with the use of customers’ de-identified or aggregated DNA and other data. But our experts say that this research may in some cases not be the kind of altruistic research customers imagine, and that opting in can mean sharing with third parties more than just your de-identified DNA. While our analysis found that the protections for a person’s DNA data for the most part appeared relatively solid, opting into research opens up potential vulnerabilities. 

We closely evaluated the policies regarding research and the informed consent forms for four of the five companies in our study: 23andMe, Ancestry, GenoPalate, and MyHeritage. (We excluded CircleDNA from this part of the analysis because its platform does not allow access to the full user interface without valid DNA test results; therefore we were unable to view the company’s research consent form or evaluate the user experience of a typical customer.)

23andMe told CR that more than 80 percent of its customers do opt in to allowing their data to be used for research. “While customers have different reasons to opt into research, many are doing so out of a desire to contribute to and accelerate scientific and medical discovery,” says Jacquie Haggarty, vice president, deputy general counsel, and privacy officer at 23andMe .

All four of the companies ask their customers to proactively opt in to such research, rather than including them in research by default and requiring them to opt out, which is a plus for consumers. However, what consumers are opting into isn’t always as clear as it could be, says CR’s Fitzgerald. For instance, “research” could mean scientific studies conducted by third-party academic institutions, which people may view as a way to contribute to the common good. “They understand the advances that can be made in science through the sharing of genetic information. And people want to help with that,” says Jennifer Lynch, surveillance litigation director at the Electronic Frontier Foundation (EFF), who wasn’t involved in our study.

However, in some cases, it could mean internal research intended for product development for the company itself. “Several companies have language that implies or outright states that new products could be developed from data accessed under research terms, which indicates a very fuzzy line between scientific research and corporate product development,” Fitzgerald says. At GenoPalate, for example, the lead investigator on scientific studies conducted with consumers’ DNA data is also the CEO of the company. GenoPalate told CR that all data used for…

(Excerpt) To read the full article , click here
Image credit: source