Genetic Information Privacy Act of 2019
The source supplies the latest action, but no lifecycle stage.
Latest action (10 Apr 2019): Referred to the Subcommittee on Consumer Protection and Commerce.
What this bill does
The Genetic Information Privacy Act of 2019, if enacted, would require companies offering commercial genetic testing services to obtain explicit consent from customers before disclosing their personally identifiable information, including genetic data, to third parties. For genetic information intended for medical research, companies would need to follow federal rules for informed consent. Customers would also have the option to consent to the disclosure of their genetic information separately from other personally identifiable data, and companies could not refuse service if consent for broader disclosure is withheld.
This bill affects individuals who use commercial genetic testing services. It aims to give them more control over their genetic and personal information. The Federal Trade Commission (FTC) would be responsible for creating regulations to ensure these companies secure customer data against unauthorized access. The FTC and state attorneys general would have enforcement powers.
This bill was introduced in the House of Representatives in April 2019 and referred to the Committee on Energy and Commerce. It has not advanced further from its introduction stage. If it were to move forward, it would need to pass the House and the Senate before potentially being signed into law.
Plain-English summary generated by Bill100 AI from the official record. Always verify against the source below.
Official summary
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.
Timeline
10 Apr 2019
Referred to the Subcommittee on Consumer Protection and Commerce.
Common questions
- What does H.R. 2155 do?
- The Genetic Information Privacy Act of 2019, if enacted, would require companies offering commercial genetic testing services to obtain explicit consent from customers before disclosing their personally identifiable information, including genetic data, to third parties. For genetic information intended for medical research, companies would need to follow federal rules for informed consent. Customers would also have the option to consent to the disclosure of their genetic information separately from other personally identifiable data, and companies could not refuse service if consent for broader disclosure is withheld. This bill affects individuals who use commercial genetic testing services. It aims to give them more control over their genetic and personal information. The Federal Trade Commission (FTC) would be responsible for creating regulations to ensure these companies secure customer data against unauthorized access. The FTC and state attorneys general would have enforcement powers. This bill was introduced in the House of Representatives in April 2019 and referred to the Committee on Energy and Commerce. It has not advanced further from its introduction stage. If it were to move forward, it would need to pass the House and the Senate before potentially being signed into law.
- Has H.R. 2155 become law?
- The source does not supply a confirmed lifecycle stage for H.R. 2155. Check the latest action and official source below.
- Who sponsored H.R. 2155?
- H.R. 2155 was sponsored by Rep. Rush, Bobby L. [D-IL-1] (D-IL), with 10 cosponsors.
- What's the latest action on H.R. 2155?
- Referred to the Subcommittee on Consumer Protection and Commerce. (10 Apr 2019).
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To amend the Children's Online Privacy Protection Act of 1998 to strengthen protections relating to the online collection, use, and disclosure of personal information of children and minors, and for other purposes.
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