Would You Trade Your Privacy for Information About Your Genome?—Kristen V. Brown—Futures of Health Reporter, Bloomberg News

Finding Genius Podcast

We’re living in an age of unprecedented access to genomic data; all we have to do is send off a sample of saliva in the mail to a company like 23andMe or Ancestry to get a comprehensive report containing information about our ancestral lineage, diseases we might pass on to our children, and diseases we might develop during our lifetime. There’s no question that understanding genomic data affords a great benefit to many people, but there’s a tradeoff that’s critical to acknowledge, and it’s one of privacy. Where does our information go once in the hands of these companies? Can it really be deleted at the press of a button, as we are led to believe?

If you have been under the impression that you have control over your genomic data, even after it’s been tested by a company, you aren’t alone. Most people don’t realize that once a sample of DNA undergoes health-related genomic data analysis, federal law dictates that it must be saved. In other words, it would be illegal for a company like 23andMe or Ancestry to delete it. If this were more widely understood by the public, it might change the frequency and ease with which we hand over our DNA. This might be particularly true if we were more cognizant of the fact that our DNA doesn’t just contain information about ourselves, but about those related to us. Kristen V. Brown, reporter with Bloomberg News, joins the podcast to discuss all of this and more, including:

• What level of control you DO have over your genetic information, and how to exercise it
• Why there is a federal law against the deletion of certain genomic information and genetic material
• Where your data is likely to go once you send it to a private company like 23andMe or Ancestry