II
119THCONGRESS
1
STSESSION S. 863
To provide consumers with the right to delete their genomic data, and for
other purposes.
IN THE SENATE OF THE UNITED STATES
MARCH5, 2025
Mr. C
ASSIDY(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 Representa-1
tives of the United States of America in Congress assembled, 2
SECTION 1. SHORT TITLE. 3
This Act may be cited as the ‘‘Genomic Data Protec-4
tion Act’’. 5
SEC. 2. CONSUMER RIGHTS REGARDING PRIVACY OF 6
GENOMIC DATA. 7
(a) R
EQUIREMENTS.— 8
(1) C
ONSUMER CONTROLS .— 9
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(A) IN GENERAL.—A direct-to-consumer 1
genomic testing company shall provide a simple 2
and effective mechanism to allow a consumer 3
to— 4
(i) access the genomic data of the con-5
sumer; and 6
(ii) subject to paragraph (4)— 7
(I) delete the account of the con-8
sumer, including any genomic data as-9
sociated with such account; and 10
(II) request the destruction of 11
any biological sample of the consumer. 12
(B) R
EQUIRED MECHANISM .—The direct- 13
to-consumer genomic testing company shall 14
make available to a consumer the mechanism 15
described in subparagraph (A) through the pri-16
mary means by which the company commu-17
nicates with the consumer. 18
(2) N
OTIFICATION.— 19
(A) C
ONSUMER CONTROLS AND USE OF 20
DEIDENTIFIED GENOMIC DATA .—A direct-to- 21
consumer genomic testing company shall make 22
available, in a clear and conspicuous, not mis-23
leading, and easy-to-read manner a notice 24
that— 25
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(i) provides a detailed and accurate 1
representation of the rights set forth in 2
clauses (i) and (ii) of paragraph (1)(A); 3
and 4
(ii) discloses that the deidentified 5
genomic data of a consumer may be shared 6
or disclosed to conduct medical or scientific 7
research, consistent with the privacy regu-8
lations promulgated under section 264(c) 9
of the Health Insurance Portability and 10
Accountability Act of 1996 (42 U.S.C. 11
1320d–2 note). 12
(B) P
URCHASE OF COMPANY .—In the 13
event that a direct-to-consumer genomic testing 14
company is purchased or otherwise acquired by 15
another entity, the direct-to-consumer genomic 16
testing company shall send to each consumer, 17
not fewer than 30 days prior to the date on 18
which the purchase or acquisition is complete, a 19
notice that includes— 20
(i) the identity of the entity pur-21
chasing or otherwise acquiring the com-22
pany; and 23
(ii) a detailed and accurate represen-24
tation of the how a consumer can exercise 25
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the rights set forth in clauses (i) and (ii) 1
of paragraph (1)(A) under the new owner-2
ship. 3
(3) P
ROCESSING OF DELETION OR DESTRUC -4
TION REQUESTS.— 5
(A) I
N GENERAL.—With respect to a con-6
sumer’s request to delete the genomic data or 7
to destroy the biological sample of the con-8
sumer, a direct-to-consumer genomic testing 9
company shall— 10
(i) fulfill such request not later than 11
30 days after the date on which the con-12
sumer makes such request; and 13
(ii) notify the consumer of such dele-14
tion or destruction not later than 30 days 15
after the deletion or destruction. 16
(B) O
UTSTANDING REQUESTS DURING 17
PURCHASE OF COMPANY .—In the event that a 18
direct-to-consumer genomic testing company is 19
purchased or otherwise acquired by another en-20
tity while a consumer’s request to delete the 21
genomic data or to destroy the biological sample 22
of the consumer is outstanding— 23
(i) the entity that is purchasing or 24
otherwise acquiring the company shall 25
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comply with the requirements described in 1
subparagraph (A); and 2
(ii) the 30-day period to fulfill such 3
request shall begin on the date on which 4
the consumer makes such request to the 5
direct-to-consumer genomic testing com-6
pany. 7
(4) E
XCEPTIONS.—A direct-to-consumer 8
genomic testing company shall not permit a con-9
sumer to exercise a right described in paragraph 10
(1)(A)(ii) if the company determines that the exer-11
cise of the right would require the deletion of infor-12
mation— 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) E
NFORCEMENT.— 19
(1) U
NFAIR OR DECEPTIVE ACTS OR PRAC -20
TICES.—A violation of this section or a regulation 21
promulgated thereunder shall be treated as a viola-22
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
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(2) POWERS OF THE COMMISSION .— 1
(A) I
N 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 in-7
corporated into and made a part of this section. 8
(B) P
RIVILEGES 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 im-12
munities provided in the Federal Trade Com-13
mission Act (15 U.S.C. 41 et seq.). 14
(C) A
UTHORITY PRESERVED .—Nothing in 15
this section shall be construed to limit the au-16
thority of the Commission under any other pro-17
vision of law. 18
(D) R
ULEMAKING.—Not later than 1 year 19
after the date of enactment of this section, the 20
Commission may promulgate in accordance with 21
section 553 of title 5, United States Code, such 22
rules as may be necessary to carry out this sec-23
tion. 24
(c) D
EFINITIONS.—In this section: 25
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(1) BIOLOGICAL SAMPLE.—The term ‘‘biological 1
sample’’ means any material part of the human, dis-2
charge therefrom, or derivative thereof, such as tis-3
sue, blood, urine, or saliva, known to contain 4
deoxyribonucleic acid (DNA). 5
(2) C
OMMISSION.—The term ‘‘Commission’’ 6
means the Federal Trade Commission. 7
(3) C
ONSUMER.—The term ‘‘consumer’’ means 8
an individual who provides a biological sample to a 9
direct-to-consumer genomic testing company. 10
(4) D
EIDENTIFIED GENOMIC DATA .—The term 11
‘‘deidentified genomic data’’ means data that cannot 12
be used to infer information about, or otherwise be 13
linked to, a particular individual, provided that the 14
business that possesses the information does all of 15
the following: 16
(A) Takes reasonable measures to ensure 17
that the information cannot be associated with 18
a particular individual. 19
(B) Publicly commits to maintain and use 20
the information only in deidentified form and 21
not to attempt to reidentify the information, ex-22
cept that the business may attempt to reiden-23
tify the information solely for the purpose of 24
determining whether its deidentification proc-25
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esses satisfy the requirements of this subpara-1
graph, provided that the business does not use 2
or disclose any information reidentified in this 3
process and destroys the reidentified informa-4
tion upon completion of that assessment. 5
(C) Contractually obligates any recipients 6
of the information to take reasonable measures 7
to ensure that the information cannot be associ-8
ated with a particular individual and to commit 9
to maintaining and using the information only 10
in deidentified form and not to reidentify the 11
information. 12
(5) D
IRECT-TO-CONSUMER GENOMIC TESTING 13
COMPANY.— 14
(A) I
N GENERAL.—The term ‘‘direct-to- 15
consumer genomic testing company’’ means a 16
person that does any of the following: 17
(i) Manufactures or develops genomic 18
testing products or services for sale di-19
rectly to consumers. 20
(ii) Analyzes or interprets genomic 21
data obtained from a consumer. 22
(iii) Collects, uses, maintains, or dis-23
closes genomic data collected or derived 24
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from a direct-to-consumer genomic testing 1
product or service. 2
(iv) Purchases or acquires genomic 3
data from a direct-to-consumer genomic 4
testing company. 5
(B) E
XCLUSION FOR HEALTH CARE PRO -6
FESSIONALS.—The term ‘‘direct-to-consumer 7
genomic testing company’’ shall not include a 8
health care professional (as defined in section 9
225 of the Public Health Service Act (42 10
U.S.C. 234)) that performs an action described 11
in subparagraph (A) for purposes of diagnosis 12
or treatment of a medical condition. 13
(6) G
ENOMIC DATA.— 14
(A) I
N GENERAL.—The term ‘‘genomic 15
data’’— 16
(i) means any data, regardless of its 17
format or whether the data has been 18
deidentified, that results from the analysis 19
of a biological sample from a consumer 20
and concerns genomic material; and 21
(ii) includes— 22
(I) deoxyribonucleic acids (DNA), 23
ribonucleic acids (RNA), genes, chro-24
mosomes, alleles, genomes, alterations 25
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or modifications to DNA or RNA, and 1
single nucleotide polymorphisms 2
(SNPs); 3
(II) uninterpreted data that re-4
sults from the analysis of the biologi-5
cal sample; or 6
(III) any information extrapo-7
lated, derived, or inferred therefrom. 8
(B) E
XCLUSION 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 promul-14
gated under section 264(c) of the Health Insur-15
ance Portability and Accountability Act of 1996 16
(42 U.S.C. 1320d–2 note). 17
(7) G
ENOMIC TESTING PRODUCT OR SERV -18
ICE.—The term ‘‘genomic testing product or serv-19
ice’’ means any testing product or service that ana-20
lyzes or interprets the genomic data or biological 21
sample of a consumer. 22
(d) R
ELATIONSHIP TO FEDERAL AND STATE 23
L
AWS.— 24
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(1) FEDERAL LAW PRESERVATION .—Nothing in 1
this Act, or a regulation promulgated under this Act, 2
shall be construed to limit any other provision of 3
Federal law, except as specifically provided in this 4
Act. 5
(2) S
TATE LAW PRESERVATION .—Nothing in 6
this Act, or a regulation promulgated under this Act, 7
shall be construed to preempt, displace, or supplant 8
any State law, except to the extent that a provision 9
of State law conflicts with a provision of this Act, 10
or a regulation promulgated under this Act, and 11
then only to the extent of the conflict. 12
Æ
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