Genetic Information Privacy Act of 2019

Genetic Information Privacy Act of 2019

This bill prohibits commercial genetic testing services from disclosing consumers' personally identifiable information to third parties without the consumer's express consent. In the case of the disclosure of personally identifiable information for medical research, a genetic testing service must follow the federal rules for obtaining informed consent in the context of research involving human subjects. Further, genetic testing services must provide consumers with the option to consent to disclose a consumer's genetic information but not to disclose other personally identifiable information. A genetic testing service may not condition services on obtaining consent to disclose such information. The Federal Trade Commission (FTC) must promulgate regulations establishing how genetic testing services are required to secure such personally identifiable information against unauthorized access.

The bill grants the FTC and state attorneys general powers to enforce compliance with the requirements of this bill.