Nancy Perkins, Cody Venzke, Danielle Manner, Sydney Saubestre
Session Time: Thur, Nov 5, 2026: 02:30 PM-03:30 PM
Innovative work with genetic information, including with AI, has the power to revolutionize cures, increase accuracy in law enforcement, and enlighten and empower individuals in making choices for themselves and the generations to follow. But power comes with risk. This panel will explore current laws and policies concerning genetic information privacy.  Questions to be addressed include:
- What laws exist to protect the privacy of genetic information, and what policies underlie them?
- How can consumers and patient’s control the collection, use, and sharing of their genetic information?
- What lessons can be learned from the 23andMe bankruptcy and data security breach experience?
- How can companies involved in clinical research with genetic information, including global clinical trials, manage legal risk?
- What legal and policy issues are on the horizon for companies that collect, use, and process genetic information?
Nancy Perkins, Counsel, Arnold & Porter
Cody Venzke, Senior Staff Attorney, Speech, Privacy & Technology Project, American Civil Liberties Union
Danielle Manner, Chief Privacy Officer, Senior Associate General Counsel, Gilead
Sydney Saubestre, Senior Policy Analyst, Privacy & Data Project, Center for Democracy & Technology
Reading Materials:
