Bioethics Blogs

Genetic Surveillance: Consumer Genomics and DNA Forensics

“If we each keep our genetic information secret, then we’re all going to die.”

So says Bill Maris, founder, President and CEO of Google Ventures, that $2B investment firm with stakes in more than 280 startups, looking to spend $425M on anti-aging and life extension this year.

Maris isn’t simply trying (successfully) to make headlines, he’s looking to drive a consumer genomics market by convincing people to hand over their genetic material for research. He isn’t alone on this front. 23andMe and have also engaged in grand, seductive promises: Learn your carrier status! Meet your long-lost relatives! Learn how “African” your DNA is, based on “ancestry informative markers!”

This kind of hype downplays the limits and obstacles to providing reliable genetic information and using it to generate beneficial health impacts. It completely obscures the extent to which research as a system—corporate, academic, governmental, what have you—has been co-opted by private gains and has proceeded with little-to-no accountability to the public good and health. And it elides the real drivers of the genomics business model: mass data collection and brokering data access.

Much of the recent reporting on consumer genomics has focused on the FDA’s battle with 23andMe about selling clinically unreliable health information, and on business developments in the sector. Earlier this month, we learned that is in talks with FDA to start selling health information. Last week, the big news was that 23andMe has been cleared by the FDA to begin selling carrier screening tests for 36 genetic variants.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.