The Need for Federal Action

The current situation highlights the urgent need for comprehensive federal legislation governing genetic privacy. Such legislation could:

• Establish clear standards for the collection, storage, and use of genetic data.
• Define the rights of individuals regarding their genetic information.
• Set penalties for misuse or unauthorized disclosure of genetic data.
• Create a framework for informed consent that reflects the unique nature of genetic information.

Until such legislation is enacted, companies like 23andMe will continue to operate in a regulatory environment that many consider inadequate given the sensitive nature of the data they handle.