H.R. 2155 · 116th Congress
Genetic Information Privacy Act of 2019
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Never voted on. It didn't reach a floor vote before the 116th Congress ended, so it expired. A bill has to be introduced again to be considered in a new Congress.
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RushSponsor10 cosponsors · 10 D
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Jackson Lee
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Case
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Titus
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Carson
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Soto
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Norton
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Hastings
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San Nicolas
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Davis
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Thompson0 signed on when it was introduced; the rest joined later. Cosponsors who withdrew aren't shown.
This bill prohibits commercial genetic testing services from disclosing consumers' personally identifiable information to third parties without the consumer's express consent.
What it does: CRS summary · Introduced in House · Apr 9, 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.
Written by the nonpartisan Congressional Research Service. All summary versions on Congress.gov
About this bill and sources
Official title: Genetic Information Privacy Act of 2019
Latest action (Apr 10, 2019): Referred to the Subcommittee on Consumer Protection and Commerce.
Policy area: Health · Origin: House · Introduced: Apr 9, 2019
Official page on Congress.gov · Bill text (GovInfo) · Status record (XML)
No recorded floor vote found.