DNA and Privacy

Tens of millions of Americans alone have submitted their DNA to companies in the hopes of learning more about their ancestry.

Genetic testing for ancestry research and identifying potential health issues is big business.

However, as with any tool used for good, there can be a downside.

Recently, a hacker stole the genetic data from millions of users of the popular genetics test kit company 23andMe. That data then went on sale on the dark web.

It's not the first time concerns about DNA and privacy have been in the news.

In this episode of Privacy Files, we are joined by Colin from Anonyome Labs Security and Compliance Team to discuss some of the most prevailing privacy issues impacting consumers as it relates to DNA.

We kick off the episode by looking at the privacy policies of 23andMe and Ancestry.com. Then we discuss the lack of consumer protections surrounding DNA ancestry testing companies versus the more regulated world of healthcare.

If you have concerns, take the time to read the privacy policy.

We then jump into a landmark case where the Federal Trade Commission (FTC) took action against Vitagene (now 1Health.io) for changing material privacy terms without customers' consent.

One concerning development in the at-home DNA testing space is the trend of local law enforcement obtaining warrants to review DNA data collected by consumer ancestry and genetics testing companies. We review some recent cases and discuss the implications.

Perhaps the craziest story of all is the recent discovery that high-quality human DNA can be found all over in the natural environment. And what scientists can do with that DNA will shock you. It shocked us!

We close out the episode by looking at the ongoing controversy of newborn DNA sequencing. Today it is common practice for blood samples to be taken from babies just after birth. Healthcare professionals say this is a vital practice to screen for serious health issues. But some say what is being done with newborn blood samples has gone too far.

Links Referenced:

https://www.ftc.gov/business-guidance/blog/2023/06/privacy-security-genetic-information-putting-dna-companies-test

https://fortune.com/2023/10/06/23andme-user-data-hacked/

https://www.govtech.com/public-safety/police-use-of-forensic-genealogy-tech-raises-privacy-concerns

https://www.nytimes.com/2019/11/05/business/dna-database-search-warrant.html

https://www.nytimes.com/2019/06/12/smarter-living/how-to-protect-your-dna-data.html

https://www.smithsonianmag.com/smart-news/scientists-can-now-pull-human-dna-from-the-air-and-water-raising-privacy-questions-180982192/

https://www.aclu.org/news/privacy-technology/widespread-newborn-dna-sequencing-will-worsen-risks-to-genetic-privacy

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