II 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Genomic Data Protec5 tion Act’’. 

6 SEC. 2. CONSUMER RIGHTS REGARDING GENOMIC DATA. 

7 (a) REQUIREMENTS.— 

8 (1) CONSUMER CONTROLS.—A direct-to-con9 sumer genomic testing company shall develop proce10 dures and provide an effective mechanism (including 


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1 an option that is through the primary medium by 

2 which the company communicates with the con3 sumer) to allow a consumer to— 

4 (A) access the genomic data of the con5 sumer; and 

6 (B) subject to paragraph (4)— 

7 (i) delete the account of the consumer, 

8 including any genomic data associated with 

9 such account; and 

10 (ii) request the destruction of any bio11 logical sample of the consumer. 

12 (2) NOTIFICATION.— 

13 (A) CONSUMER CONTROLS AND USE OF

14 DEIDENTIFIED GENOMIC DATA.—A direct-to15 consumer genomic testing company shall make 

16 available, in a clear and conspicuous, not mis17 leading, and easy-to-read manner a notice 

18 that— 

19 (i) provides a detailed and accurate 

20 representation of the rights set forth in 

21 subparagraphs (A) and (B) of paragraph 

22 (1); and 

23 (ii) discloses that the deidentified 

24 genomic data of a consumer may be shared 

25 or disclosed to conduct medical or scientific 


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1 research, consistent with the privacy regu2 lations promulgated under section 264(c) 

3 of the Health Insurance Portability and 

4 Accountability Act of 1996 (42 U.S.C. 

5 1320d–2 note). 

6 (B) PURCHASE OF COMPANY OR GENOMIC

7 DATA.—In the event that a direct-to-consumer 

8 genomic testing company (or the genomic data 

9 of such company) is purchased or otherwise ac10 quired by another entity, the direct-to-consumer 

11 genomic testing company shall send to each 

12 consumer, not fewer than 30 days prior to the 

13 date on which the purchase or acquisition is 

14 complete, a notice that includes— 

15 (i) the identity of the entity pur16 chasing or otherwise acquiring the com17 pany; and 

18 (ii) a detailed and accurate represen19 tation of the rights set forth in subpara20 graphs (A) and (B) of paragraph (1). 

21 (3) PROCESSING OF DELETION OR DESTRUC22 TION REQUESTS.—With respect to a consumer’s re23 quest to delete the genomic data or to destroy the 

24 biological sample of the consumer, a direct-to-con25 sumer genomic testing company shall— 


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1 (A) fulfill such request not later than 30 

2 days after the date on which the consumer 

3 makes such request; and 

4 (B) notify the consumer of such deletion or 

5 destruction not later than 30 days after the de6 letion or destruction. 

7 (4) EXCEPTIONS.—A direct-to-consumer 

8 genomic testing company shall not permit a con9 sumer to exercise a right described in paragraph 

10 (1)(B) if the company determines that the exercise 

11 of the right would require the deletion of informa12 tion— 

13 (A) subject to a warrant, lawfully executed 

14 subpoena, or other court order; or 

15 (B) the company is required to retain in 

16 order to comply with any other applicable legal 

17 or regulatory requirement. 

18 (b) ENFORCEMENT.— 

19 (1) UNFAIR OR DECEPTIVE ACTS OR PRAC20 TICES.—A violation of this section or a regulation 

21 promulgated thereunder shall be treated as a viola22 tion of a rule defining an unfair or deceptive act or 

23 practice under section 18(a)(1)(B) of the Federal 

24 Trade Commission Act (15 U.S.C. 57a(a)(1)(B)). 

25 (2) POWERS OF THE COMMISSION.— 


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1 (A) IN GENERAL.—The Commission shall 

2 enforce this section in the same manner, by the 

3 same means, and with the same jurisdiction, 

4 powers, and duties as though all applicable 

5 terms and provisions of the Federal Trade 

6 Commission Act (15 U.S.C. 41 et seq.) were in7 corporated into and made a part of this section. 

8 (B) PRIVILEGES AND IMMUNITIES.—Any 

9 person who violates this section or a regulation 

10 promulgated thereunder shall be subject to the 

11 penalties and entitled to the privileges and im12 munities provided in the Federal Trade Com13 mission Act (15 U.S.C. 41 et seq.). 

14 (C) AUTHORITY PRESERVED.—Nothing in 

15 this section shall be construed to limit the au16 thority of the Commission under any other pro17 vision of law. 

18 (D) RULEMAKING.—Not later than 1 year 

19 after the date of enactment of this section, the 

20 Commission shall promulgate in accordance 

21 with section 553 of title 5, United States Code, 

22 such rules as may be necessary to carry out this 

23 section. 

24 (c) DEFINITIONS.—In this section: 


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1 (1) BIOLOGICAL SAMPLE.—The term ‘‘biological 

2 sample’’ means any material part of the human, dis3 charge therefrom, or derivative thereof, such as tis4 sue, blood, urine, or saliva, known to contain 

5 deoxyribonucleic acid (DNA). 

6 (2) COMMISSION.—The term ‘‘Commission’’ 

7 means the Federal Trade Commission. 

8 (3) CONSUMER.—The term ‘‘consumer’’ means 

9 an individual that obtains a genomic testing product 

10 or service from a direct-to-consumer genomic testing 

11 company. 

12 (4) DIRECT-TO-CONSUMER GENOMIC TESTING

13 COMPANY.— 

14 (A) IN GENERAL.—The term ‘‘direct-to15 consumer genomic testing company’’ means a 

16 person that does any of the following: 

17 (i) Sells, markets, interprets, analyzes, 

18 or otherwise offers genomic testing prod19 ucts or services directly to consumers. 

20 (ii) Analyzes genomic data obtained 

21 from a consumer. 

22 (iii) Collects, uses, maintains, or dis23 closes genomic data collected or derived 

24 from a direct-to-consumer genomic testing 

25 product or service. 


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1 (iv) Purchases or acquires genomic 

2 data from a direct-to-consumer genomic 

3 testing company. 

4 (B) EXCLUSION FOR HEALTH CARE PRO5 FESSIONALS.—The term ‘‘direct-to-consumer 

6 genomic testing company’’ shall not include a 

7 health care professional (as defined in section 

8 225 of the Public Health Service Act (42 

9 U.S.C. 234)) that performs an action described 

10 in subparagraph (A) for purposes of diagnosis 

11 or treatment of a medical condition. 

12 (5) GENOMIC DATA.— 

13 (A) IN GENERAL.—The term ‘‘genomic 

14 data’’— 

15 (i) means any data, regardless of its 

16 format or whether the data has been 

17 deidentified, that results from the analysis 

18 of a biological sample from a consumer 

19 and concerns genomic material; and 

20 (ii) includes— 

21 (I) deoxyribonucleic acids (DNA), 

22 ribonucleic acids (RNA), genes, chro23 mosomes, alleles, genomes, alterations 

24 or modifications to DNA or RNA, and 


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1 single nucleotide polymorphisms 

2 (SNPs); 

3 (II) uninterpreted data that re4 sults from the analysis of the biologi5 cal sample; or 

6 (III) any information extrapo7 lated, derived, or inferred therefrom. 

8 (B) EXCLUSION OF DEIDENTIFIED

9 GENOMIC DATA.—The term ‘‘genomic data’’ 

10 shall not include the deidentified genomic data 

11 of a consumer to the extent that such data is 

12 used to conduct medical or scientific research, 

13 consistent with the privacy regulations promul14 gated under section 264(c) of the Health Insur15 ance Portability and Accountability Act of 1996 

16 (42 U.S.C. 1320d–2 note). 

17 (6) GENOMIC TESTING PRODUCT OR SERV18 ICE.—The term ‘‘genomic testing product or serv19 ice’’ means any testing product or service that ana20 lyzes or otherwise uses the genomic data or biologi21 cal sample of a consumer. 

22 (d) RELATIONSHIP TO FEDERAL AND STATE

23 LAWS.— 

24 (1) FEDERAL LAW PRESERVATION.—Nothing in 

25 this Act, or a regulation promulgated under this Act, 


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1 shall be construed to limit any other provision of 

2 Federal law, except as specifically provided in this 

3 Act. 

4 (2) STATE LAW PRESERVATION.—Nothing in 

5 this Act, or a regulation promulgated under this Act, 

6 shall be construed to preempt, displace, or supplant 

7 any State law, except to the extent that a provision 

8 of State law conflicts with a provision of this Act, 

9 or a regulation promulgated under this Act, and 

10 then only to the extent of the conflict. 

Æ 


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