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[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 5433 Introduced in Senate (IS)]

<DOC>

118th CONGRESS
  2d Session
                                S. 5433

 To provide consumers with the right to delete their genomic data, and 
                          for other purposes.

_______________________________________________________________________

                   IN THE SENATE OF THE UNITED STATES

                            December 5, 2024

Mr. Cassidy (for himself and Mr. Peters) introduced the following bill; 
    which was read twice and referred to the Committee on Commerce, 
                      Science, and Transportation

_______________________________________________________________________

                                 A BILL

 
 To provide consumers with the right to delete their genomic data, and 
                          for other purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Genomic Data Protection Act''.

SEC. 2. CONSUMER RIGHTS REGARDING GENOMIC DATA.

    (a) Requirements.--
            (1) Consumer controls.--A direct-to-consumer genomic 
        testing company shall develop procedures and provide an 
        effective mechanism (including an option that is through the 
        primary medium by which the company communicates with the 
        consumer) to allow a consumer to--
                    (A) access the genomic data of the consumer; and
                    (B) subject to paragraph (4)--
                            (i) delete the account of the consumer, 
                        including any genomic data associated with such 
                        account; and
                            (ii) request the destruction of any 
                        biological sample of the consumer.
            (2) Notification.--
                    (A) Consumer controls and use of deidentified 
                genomic data.--A direct-to-consumer genomic testing 
                company shall make available, in a clear and 
                conspicuous, not misleading, and easy-to-read manner a 
                notice that--
                            (i) provides a detailed and accurate 
                        representation of the rights set forth in 
                        subparagraphs (A) and (B) of paragraph (1); and
                            (ii) discloses that the deidentified 
                        genomic data of a consumer may be shared or 
                        disclosed to conduct medical or scientific 
                        research, consistent with the privacy 
                        regulations promulgated under section 264(c) of 
                        the Health Insurance Portability and 
                        Accountability Act of 1996 (42 U.S.C. 1320d-2 
                        note).
                    (B) Purchase of company or genomic data.--In the 
                event that a direct-to-consumer genomic testing company 
                (or the genomic data of such company) is purchased or 
                otherwise acquired by another entity, the direct-to-
                consumer genomic testing company shall send to each 
                consumer, not fewer than 30 days prior to the date on 
                which the purchase or acquisition is complete, a notice 
                that includes--
                            (i) the identity of the entity purchasing 
                        or otherwise acquiring the company; and
                            (ii) a detailed and accurate representation 
                        of the rights set forth in subparagraphs (A) 
                        and (B) of paragraph (1).
            (3) Processing of deletion or destruction requests.--With 
        respect to a consumer's request to delete the genomic data or 
        to destroy the biological sample of the consumer, a direct-to-
        consumer genomic testing company shall--
                    (A) fulfill such request not later than 30 days 
                after the date on which the consumer makes such 
                request; and
                    (B) notify the consumer of such deletion or 
                destruction not later than 30 days after the deletion 
                or destruction.
            (4) Exceptions.--A direct-to-consumer genomic testing 
        company shall not permit a consumer to exercise a right 
        described in paragraph (1)(B) if the company determines that 
        the exercise of the right would require the deletion of 
        information--
                    (A) subject to a warrant, lawfully executed 
                subpoena, or other court order; or
                    (B) the company is required to retain in order to 
                comply with any other applicable legal or regulatory 
                requirement.
    (b) Enforcement.--
            (1) Unfair or deceptive acts or practices.--A violation of 
        this section or a regulation promulgated thereunder shall be 
        treated as a violation of a rule defining an unfair or 
        deceptive act or practice under section 18(a)(1)(B) of the 
        Federal Trade Commission Act (15 U.S.C. 57a(a)(1)(B)).
            (2) Powers of the commission.--
                    (A) In general.--The Commission shall enforce this 
                section in the same manner, by the same means, and with 
                the same jurisdiction, powers, and duties as though all 
                applicable terms and provisions of the Federal Trade 
                Commission Act (15 U.S.C. 41 et seq.) were incorporated 
                into and made a part of this section.
                    (B) Privileges and immunities.--Any person who 
                violates this section or a regulation promulgated 
                thereunder shall be subject to the penalties and 
                entitled to the privileges and immunities provided in 
                the Federal Trade Commission Act (15 U.S.C. 41 et 
                seq.).
                    (C) Authority preserved.--Nothing in this section 
                shall be construed to limit the authority of the 
                Commission under any other provision of law.
                    (D) Rulemaking.--Not later than 1 year after the 
                date of enactment of this section, the Commission shall 
                promulgate in accordance with section 553 of title 5, 
                United States Code, such rules as may be necessary to 
                carry out this section.
    (c) Definitions.--In this section:
            (1) Biological sample.--The term ``biological sample'' 
        means any material part of the human, discharge therefrom, or 
        derivative thereof, such as tissue, blood, urine, or saliva, 
        known to contain deoxyribonucleic acid (DNA).
            (2) Commission.--The term ``Commission'' means the Federal 
        Trade Commission.
            (3) Consumer.--The term ``consumer'' means an individual 
        that obtains a genomic testing product or service from a 
        direct-to-consumer genomic testing company.
            (4) Direct-to-consumer genomic testing company.--
                    (A) In general.--The term ``direct-to-consumer 
                genomic testing company'' means a person that does any 
                of the following:
                            (i) Sells, markets, interprets, analyzes, 
                        or otherwise offers genomic testing products or 
                        services directly to consumers.
                            (ii) Analyzes genomic data obtained from a 
                        consumer.
                            (iii) Collects, uses, maintains, or 
                        discloses genomic data collected or derived 
                        from a direct-to-consumer genomic testing 
                        product or service.
                            (iv) Purchases or acquires genomic data 
                        from a direct-to-consumer genomic testing 
                        company.
                    (B) Exclusion for health care professionals.--The 
                term ``direct-to-consumer genomic testing company'' 
                shall not include a health care professional (as 
                defined in section 225 of the Public Health Service Act 
                (42 U.S.C. 234)) that performs an action described in 
                subparagraph (A) for purposes of diagnosis or treatment 
                of a medical condition.
            (5) Genomic data.--
                    (A) In general.--The term ``genomic data''--
                            (i) means any data, regardless of its 
                        format or whether the data has been 
                        deidentified, that results from the analysis of 
                        a biological sample from a consumer and 
                        concerns genomic material; and
                            (ii) includes--
                                    (I) deoxyribonucleic acids (DNA), 
                                ribonucleic acids (RNA), genes, 
                                chromosomes, alleles, genomes, 
                                alterations or modifications to DNA or 
                                RNA, and single nucleotide 
                                polymorphisms (SNPs);
                                    (II) uninterpreted data that 
                                results from the analysis of the 
                                biological sample; or
                                    (III) any information extrapolated, 
                                derived, or inferred therefrom.
                    (B) Exclusion of deidentified genomic data.--The 
                term ``genomic data'' shall not include the 
                deidentified genomic data of a consumer to the extent 
                that such data is used to conduct medical or scientific 
                research, consistent with the privacy regulations 
                promulgated under section 264(c) of the Health 
                Insurance Portability and Accountability Act of 1996 
                (42 U.S.C. 1320d-2 note).
            (6) Genomic testing product or service.--The term ``genomic 
        testing product or service'' means any testing product or 
        service that analyzes or otherwise uses the genomic data or 
        biological sample of a consumer.
    (d) Relationship to Federal and State Laws.--
            (1) Federal law preservation.--Nothing in this Act, or a 
        regulation promulgated under this Act, shall be construed to 
        limit any other provision of Federal law, except as 
        specifically provided in this Act.
            (2) State law preservation.--Nothing in this Act, or a 
        regulation promulgated under this Act, shall be construed to 
        preempt, displace, or supplant any State law, except to the 
        extent that a provision of State law conflicts with a provision 
        of this Act, or a regulation promulgated under this Act, and 
        then only to the extent of the conflict.
                                 <all>
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