Understanding the Tradeoff Between Your Privacy and Information About Your GenomeKristen V. BrownFutures of Health Reporter, Bloomberg News

Published: Nov. 25, 2019, 7:35 a.m.

Never before have we had such easy access to information about our DNA, including our predisposition to diseases, whether we are likely to pass on a disease to our children, and the nature of our ancestral lineage. This information can be obtained through a process that lies entirely outside the doctor\u2019s office\u2014one that involves just sending out a sample of DNA to a company like 23andMe or Ancestry. It sounds great, but there\u2019s at least one glaring problem: very few privacy protections exist in private industry, and they certainly aren\u2019t as robust as HIPPA in the world of medicine and healthcare. This begs the question of how private our\xa0genomic data\xa0really is, who has access to it once we send it off in the mail, and what we can do to protect it from going where we might not want it to. These concerns become all the more serious when we remember that our genomic data not only contains information about ourselves, but about those who are genetically related to us.

On today\u2019s episode, Kristen V. Brown, reporter with Bloomberg News, discusses the tradeoff between privacy and the ability to obtain valuable information from our DNA, and how many companies falsely lead us to believe that we\u2019re in control of who does and does not see our data, and when it should or should not be deleted. In today\u2019s podcast, you will discover:

  • Why, according to federal law, DNA samples which have undergone health-related\xa0genomic data analysis\xa0are prohibited from being destroyed or deleted
  • What level of control you actually DO have over your own genomic information
  • Where your information is likely to go once you send it to a private company like 23andMe or Ancestry