PlainBillCongress, translated.Legislation. Context. Public interest.Referred to the Subcommittee on Consumer Protection and Commerce.
Congressional Research Service
Version 00 · 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.
People & committees
Rep. Rush, Bobby L. [D-IL-1] · D–IL
Legislative record
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Referred to the Subcommittee on Consumer Protection and Commerce.
Referred to the House Committee on Energy and Commerce.
Introduced in House
Introduced in House
Primary sources
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No related bills are listed in this snapshot. This does not establish whether the proposal has appeared in earlier Congresses.
Source last updated: Jan 16, 2025. Consult Congress.gov for the current record.
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