Connecticut HB 5128: AN ACT CONCERNING DIRECT-TO-CONSUMER GENETIC TESTING.

Bill Text

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General Assembly Substitute Bill No. 5128
February Session, 2026

AN ACT CONCERNING DIRECT-TO-CONSUMER GENETIC TESTING.
Be it enacted by the Senate and House of Representatives in General
Assembly convened:

Section 1. (NEW) (Effective October 1, 2026) As used in this section and 1
sections 2 and 3 of this act: 2
(1) "Biological sample" (A) means any material that is derived from 3
the human body and known to contain DNA, and (B) includes, but is 4
not limited to, any human tissue, blood, urine or saliva; 5
(2) "Consumer" means any individual who is physically present in 6
this state and a recipient, or a prospective recipient, of genetic testing; 7
(3) "De-identified data" means any data that cannot reasonably be 8
used to infer information about, or otherwise be linked to, an identified 9
or identifiable individual if the direct-to-consumer genetic testing 10
company that possesses such data (A) takes administrative and 11
technical measures to ensure that such data cannot be associated with 12
an individual, (B) publicly commits to possess and use such data 13
exclusively in de-identified form and not to attempt to reidentify such 14
data, and (C) contractually obligates any recipient of such data to satisfy 15
the criteria set forth in subparagraphs (A) and (B) of this subdivision; 16
(4) "Direct-to-consumer genetic testing company" or "company" (A) 17

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means any person doing business in this state who, in the ordinary 18
course of such business, (i) offers genetic testing directly to a consumer, 19
or (ii) collects, uses or analyzes genetic data that a consumer has 20
provided to such person, and (B) does not include any individual who 21
(i) is licensed by this state to provide health care services, and (ii) while 22
acting within the scope of such individual's practice, orders genetic 23
testing for a medical purpose; 24
(5) "DNA" means deoxyribonucleic acid; 25
(6) "Express consent" means an affirmative response by a consumer 26
to a clear, meaningful and prominent notice regarding the collection, 27
use, retention or disclosure of the consumer's genetic data for a specific 28
purpose; 29
(7) "Genetic data" (A) means any data, regardless of format, 30
concerning an individual's genetic characteristics, (B) includes, but is 31
not limited to, (i) any raw sequence data that result from sequencing all, 32
or any portion of, an individual's DNA, (ii) any genotypic or phenotypic 33
information that is obtained by analyzing an individual's raw sequence 34
data, and (iii) any information that (I) concerns a condition affecting an 35
individual's health, (II) the individual reports to a direct-to-consumer 36
genetic testing company, and (III) the direct-to-consumer genetic testing 37
company analyzes in connection with the individual's raw sequence 38
data and uses for scientific research or product development, and (C) 39
does not include de-identified data; 40
(8) "Genetic testing" means (A) any laboratory test performed on an 41
individual's complete DNA sequence, or one or more of an individual's 42
DNA regions, chromosomes, genes or gene products, for purposes of 43
determining the presence or absence of any genetic characteristic, and 44
(B) any interpretation of an individual's genetic data; and 45
(9) "Person" means any individual, association, corporation, limited 46
liability company, partnership, trust or other legal entity. 47
Sec. 2. (NEW) (Effective October 1, 2026) A consumer shall have a 48

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property right in, and shall retain the right to exercise exclusive control 49
over, any biological sample that is derived from the consumer's body 50
and provided to, or used by, a direct-to-consumer genetic testing 51
company, as well as the results of any genetic testing conducted on the 52
consumer's DNA by a direct-to-consumer genetic testing company. 53
Such right to exercise exclusive control includes, but is not limited to, 54
the right to exercise exclusive control over the collection, use, retention, 55
maintenance, disclosure or destruction of such biological sample and 56
results. 57
Sec. 3. (NEW) (Effective October 1, 2026) (a) A direct-to-consumer 58
genetic testing company shall: 59
(1) At all times transact its business and conduct its affairs in a 60
manner that is consistent with a consumer's rights under section 2 of this 61
act; 62
(2) Prior to accepting any biological sample, genetic data or payment 63
from a consumer, disclose to the consumer the company's policies and 64
procedures concerning the collection, use and disclosure of genetic data; 65
(3) Display, in a prominent and publicly accessible location on the 66
company's Internet web site, a privacy notice disclosing such company's 67
policies and procedures concerning the collection, use, access, 68
disclosure, transfer, security, retention and deletion of a consumer's 69
data and the consumer's consent thereto; 70
(4) Prior to collecting,