Should I delete my 23andMe data?

In today’s episode, we explore the complexities of genetic data privacy, particularly in light of 23andMe's recent bankruptcy filing. Anya Prince discusses the implications for customer data, the legal protections in place, and the unique risks associated with genetic information. The discussion also covers the challenges of data de-identification, customer rights regarding data deletion, and the potential for data breaches. The conversation concludes with reflections on the global landscape of genetic data privacy and the importance of understanding personal values in relation to data sharing.

Key Takeaways:

• 23andMe's bankruptcy raises concerns about customer data.
• New ownership of 23andMe or its data could change how genetic data is used.
• Security breaches pose significant risks to genetic data.
• Global laws on data privacy vary significantly.
• Understanding personal values is crucial in data sharing decisions.

Anya Prince, Professor of Law, Joseph F. Rosenfield Fellow in Law

Professor Prince’s teaching and research interests explore health and genetic privacy, with a particular focus on genetic discrimination, the health privacy implications of big data, and the ethical, legal, and social implications of genomic testing. Her research particularly explores the intersections of social and biological data by interrogating the ethical and legal implications of how genetic data can be used to predict social traits and behaviors and, conversely, how social data can be used to predict medical information, including reproductive information. Her interdisciplinary work has been published in legal, bioethics, and medical journals, including the Boston College Law Review, North Carolina Law Review, Iowa Law Review, JAMA, the American Journal of Bioethics, Journal of Law, Medicine, and Ethics, and Genetics in Medicine.

In 2022, she was awarded a four-year R01 grant from the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) to study the ethical, legal, and social implications of sociogenomic polygenic scores. In 2023, she was awarded a Bridging Bioethics, Research & Policymaking grant from the Greenwall Foundation to develop resources regarding state-level genetic privacy legislation. In addition to these grants, Professor Prince is an investigator, consultant, or advisory board member on multiple other NIH-funded projects. She had previously been awarded a Pathway to Independence Award (K99/R00) from NHGRI to examine the use of genetic information by life, long-term care, and disability insurers.

Professor Prince is a former Visiting Assistant Professor of Law at Indiana University’s Robert H. McKinney School of Law, where she taught Employment Law and Genetics and the Law. Before joining the legal academy, she served as a Post-doctoral Research Fellow at the UNC Center for Genomics and Society (CGS) in the Department of Social Medicine at UNC-Chapel Hill School of Medicine. Professor Prince has also worked as a Skadden Fellow and Staff Attorney at the Cancer Legal Resource Center in Los Angeles, California.

You can follow her @anyaprince.bsky.social

 

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Here are more resources related to today’s topic:

• Press Release from 23andMe about Voluntary Chapter 11 Initiation
• 23andMe Privacy Information
• California Attorney General Consumer Alert 23andMe
• HIPAA Information from US Department of Health and Human Services

• SNP genotyping: technologies and biomedical applications
• Article from Slate on GEDMatch being Acquired by Verogen
• Article from BBC News on 23andMe Profiles Being Hacked
• What is GDPR from gdpr.edu

 

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Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

 

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.