The Need for Robust Regulation
The regulatory vacuum in which companies like 23andMe operate is becoming increasingly untenable. The patchwork of state laws and the inapplicability of HIPAA to direct-to-consumer genetic testing companies leave consumers vulnerable and companies without clear guidelines. This situation calls for comprehensive federal legislation that addresses:
- Data protection standards: Establishing strict requirements for the security measures used to protect genetic data.
- Consent and control: Defining clear rules for obtaining informed consent and giving individuals control over their genetic information.