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.