New Coalition Adds Tech Voice to Genetic Privacy Debate

The Coalition for Genetic Data Protection, which includes Silicon Valley firms that sell DNA-based products, wants to set best practices and offer a key voice as legislators consider regulating the field.

Our genetic data is increasingly finding use in commercial products.

And that leads to some natural questions about privacy—questions that a new coalition hopes to answer.

The Coalition for Genetic Data Protection, a group whose existence was revealed this week by The Hill, aims to lay out best practices for the privacy of genetic products. Just three members are currently in the coalition, but they represent some of the biggest names in the space: 23andMe, Ancestry, and the recently launched Helix.

The group notes that genetics products allow consumers to gain better understanding into their own health, wellness, and genealogy, but they have come under scrutiny out of concerns such data will be reused or sold in ways the consumer didn’t anticipate.

“While we recognize the significant opportunities genetic testing and research present, we also support and advocate for reasonable and uniform privacy regulation that will ensure the responsible and ethical handling of every person’s genetic data,” the group’s website says.

In comments on the coalition’s launch, Executive Director Steve Haro, a principal at Mehlman Castagnetti Rosen & Thomas, noted that it was an attempt by the firms to make clear their stance on privacy at a time when lawmakers are considering increased regulations on the sector.

“Given the high focus that data privacy has currently in Congress, it was important for companies who are doing right by their customers on data privacy to make their voice heard,” Haro told The Hill.

The privacy issue has become an important one in recent years in the genetics space, especially after the arrest of a suspect in the Golden State Killer case, who was caught via familial DNA uncovered on a public genealogy database. The case raised concerns for privacy advocates, worried about future implications for DNA use.

Additionally, concerns about the sale of genetic data by consumer services are leading to greater discussions around the issue. In comments to Stat, Haro added that a big goal of the coalition is to have a place at the table as those discussions emerge.

“As we talk about data privacy in the context of congressional action … we want to make sure that these companies have a seat at the table and are sharing their best practices, so that if legislation is going to happen on this, there’s a way to codify this,” he said.

(Tetiana Lazunova/iStock/Getty Images Plus)

Ernie Smith

By Ernie Smith

Ernie Smith is a former senior editor for Associations Now. MORE

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