HB 5128

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:
1Section 1. (NEW) (Effective October 1, 2026) As used in this section and
2    sections 2 and 3 of this act:
3(1) "Biological sample" (A) means any material that is derived from
4    the human body and known to contain DNA, and (B) includes, but is
5    not limited to, any human tissue, blood, urine or saliva;
6(2) "Consumer" means any individual who is physically present in
7    this state and a recipient, or a prospective recipient, of genetic testing;
8      (3) "De-identified data" means any data that cannot reasonably be
9   used to infer information about, or otherwise be linked to, an identified
10   or identifiable individual if the direct-to-consumer genetic testing
11   company that possesses such data (A) takes administrative and
12   technical measures to ensure that such data cannot be associated with
13   an individual, (B) publicly commits to possess and use such data
14   exclusively in de-identified form and not to attempt to reidentify such
15   data, and (C) contractually obligates any recipient of such data to satisfy
16   the criteria set forth in subparagraphs (A) and (B) of this subdivision;
17(4) "Direct-to-consumer genetic testing company" or "company" (A)
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18 means any person doing business in this state who, in the ordinary
19 course of such business, (i) offers genetic testing directly to a consumer,
20 or (ii) collects, uses or analyzes genetic data that a consumer has
21 provided to such person, and (B) does not include any individual who
22 (i) is licensed by this state to provide health care services, and (ii) while
23 acting within the scope of such individual's practice, orders genetic
24 testing for a medical purpose;
25   (5) "DNA" means deoxyribonucleic acid;
26    (6) "Express consent" means an affirmative response by a consumer
27 to a clear, meaningful and prominent notice regarding the collection,
28 use, retention or disclosure of the consumer's genetic data for a specific
29 purpose;
30    (7) "Genetic data" (A) means any data, regardless of format,
31 concerning an individual's genetic characteristics, (B) includes, but is
32 not limited to, (i) any raw sequence data that result from sequencing all,
33 or any portion of, an individual's DNA, (ii) any genotypic or phenotypic
34 information that is obtained by analyzing an individual's raw sequence
35 data, and (iii) any information that (I) concerns a condition affecting an
36 individual's health, (II) the individual reports to a direct-to-consumer
37 genetic testing company, and (III) the direct-to-consumer genetic testing
38 company analyzes in connection with the individual's raw sequence
39 data and uses for scientific research or product development, and (C)
40 does not include de-identified data;
41    (8) "Genetic testing" means (A) any laboratory test performed on an
42 individual's complete DNA sequence, or one or more of an individual's
43 DNA regions, chromosomes, genes or gene products, for purposes of
44 determining the presence or absence of any genetic characteristic, and
45 (B) any interpretation of an individual's genetic data; and
46    (9) "Person" means any individual, association, corporation, limited
47 liability company, partnership, trust or other legal entity.
48   Sec. 2. (NEW) (Effective October 1, 2026) A consumer shall have a
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49 property right in, and shall retain the right to exercise exclusive control
50 over, any biological sample that is derived from the consumer's body
51 and provided to, or used by, a direct-to-consumer genetic testing
52 company, as well as the results of any genetic testing conducted on the
53 consumer's DNA by a direct-to-consumer genetic testing company.
54 Such right to exercise exclusive control includes, but is not limited to,
55 the right to exercise exclusive control over the collection, use, retention,
56 maintenance, disclosure or destruction of such biological sample and
57 results.
58   Sec. 3. (NEW) (Effective October 1, 2026) (a) A direct-to-consumer
59 genetic testing company shall:
60    (1) At all times transact its business and conduct its affairs in a
61 manner that is consistent with a consumer's rights under section 2 of this
62 act;
63    (2) Prior to accepting any biological sample, genetic data or payment
64 from a consumer, disclose to the consumer the company's policies and
65 procedures concerning the collection, use and disclosure of genetic data;
66    (3) Display, in a prominent and publicly accessible location on the
67 company's Internet web site, a privacy notice disclosing such company's
68 policies and procedures concerning the collection, use, access,
69 disclosure, transfer, security, retention and deletion of a consumer's
70 data and the consumer's consent thereto;
71    (4) Prior to collecting, using or disclosing a consumer's genetic data,
72 obtain the consumer's express consent for such collection, use or
73 disclosure after disclosing to such consumer (A) the company's policies
74 and procedures concerning use of the genetic data such company
75 collects from consumers, (B) the identity of each person who may access
76 the results of genetic testing performed by the company, including, but
77 not limited to, any vendor or service provider for such company who
78 may access such results, and (C) the manner in which the company may
79 disclose such consumer's genetic data;
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80    (5) In addition to the express consent required under subdivision (4)
81 of this subsection, separately obtain a consumer's express consent to (A)
82 disclose or transfer the consumer's genetic data to any person other than
83 a vendor or service provider for the company, prior to disclosing or
84 transferring such genetic data to such person, (B) use the consumer's
85 genetic data for any purpose other than the primary purpose for which
86 the company offered genetic testing directly to such consumer, prior to
87 using such genetic data for such other purpose, or (C) retain the
88 consumer's biological sample for any period following completion of
89 the genetic testing for which such consumer provided such biological
90 sample, prior to retaining such biological sample for such period;
91    (6) Obtain informed consent from a consumer in accordance with the
92 federal policy for the protection of human subjects under 45 CFR 46, as
93 amended from time to time, for any disclosure or transfer of the
94 consumer's genetic data to a third party for research purposes or
95 research conducted under the control of the company for purposes of
96 publication or generalizable knowledge;
97    (7) Not disclose the results of any genetic testing performed on a
98 consumer's DNA to any person other than the consumer, unless (A) the
99 company has obtained such consumer's express consent to such
100 disclosure, or (B) such disclosure is made to a person acting pursuant to
101 a court order, warrant or subpoena;
102    (8) Not disclose a consumer's genetic data to (A) the consumer's
103 employer, (B) any person who, in the ordinary course of business, (i)
104 offers health insurance, life insurance or long-term care insurance
105 coverage in this state or any other state, or (ii) provides information or
106 data to any insurer, as defined in section 38a-1 of the general statutes,
107 health care center, as defined in section 38a-175 of the general statutes,
108 or fraternal benefit society, as described in section 38a-595 of the general
109 statutes, for purposes of underwriting or rating of risks, or (C) any third
110 party which the company knows, or reasonably should know, intends
111 to use such genetic data for purposes of marketing, including, but not
112 limited to, targeted advertising;
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113    (9) Implement reasonable security measures to protect a consumer's
114 biological sample or genetic data from any unauthorized access,
115 destruction, use, modification or disclosure; and
116   (10) Implement a process for a consumer to (A) access the consumer's
117 genetic data from the company, (B) require the company to delete the
118 consumer's genetic data, (C) require the company to destroy, and
119 confirm that such company has destroyed, the consumer's biological
120 sample, and (D) revoke the consumer's consent for (i) the company to
121 use such consumer's genetic data for research purposes, or (ii) any third
122 party to which the company has provided such consumer's genetic data
123 to use such genetic data for research purposes.
124    (b) Any violation of subsection (a) of this section shall be deemed an
125 unfair or deceptive trade practice under subsection (a) of section 42-110b
126 of the general statutes.
  This act shall take effect as follows and shall amend the following
  sections:
  Section 1      October 1, 2026  New section
  Sec. 2  October 1, 2026  New section
  Sec. 3  October 1, 2026  New section
 GL  Joint Favorable Subst.
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