In this episode, Therese Markow and Law Professor Anya Prince discuss the pros and cons of direct-to-consumer (DTC) genetic testing. DTC testing, which began in the 1990s and grew significantly by the 2010s, allows individuals to purchase genetic tests without a doctor's prescription. By 2021, 100 million people globally used DTC testing. Companies like 23andMe and Ancestry offer ancestry, health, and wellness information. However, concerns include data privacy, potential genetic discrimination, and the accuracy of health results. Professor Prince breaks down the 2023 data breach at 23andMe, discusses what DTC companies do with customer data (including DNA samples), and what third parties may be interested in the data collected by these companies.
Key Takeaways:
There are hundreds of DTC genetic testing companies out there with a variety of levels of security measures. Some are going to be more secure than others.
Depending on which DTC company you use, some will destroy your genetic sample, but others may keep it indefinitely, potentially for future research and use.
The US doesn't have any general data privacy protections, nor any broad genetic privacy action or protection. However, many states are beginning to pass general data protection laws.
There is no right or wrong answer for participating in genetic testing. It is something each needs to weigh the pros and cons for themselves and understand what is important to them and the risks they are willing to take.
"For the most part, DTC companies can do a lot with your data, and the customer doesn't have too much control over it. The main protection is a company's privacy policy." — Anya Prince
Connect with Anya Prince:
Professional Bio: https://law.uiowa.edu/people/anya-prince
Publications: https://library.law.uiowa.edu/anya-er-prince
LinkedIn: https://www.linkedin.com/in/anya-prince-3a06b171/
Connect with Therese:
Website: www.criticallyspeaking.net
Threads: @critically_speaking
Email: theresemarkow@criticallyspeaking.net
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