Connecticut 2026 Session Status: In Committee

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

Last action — FILE NO. 233

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  1. ✓
    Introduced
  2. 2
    In Committee
  3. 3
    Passed House
  4. 4
    Passed Senate
  5. 5
    To Executive
  6. 6
    Enacted

This bill is in committee in the House. Introduced February 10, 2026. It must pass committee before a floor vote.

Next likely step: a committee vote, then a floor vote in the House.

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Where this bill stands today.

Odds of enactment

Low

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Bill Text

What changed in the latest version

294 added · 133 removed

Plain-language change summary

The latest version of House Bill 5128 has been updated to clarify its legislative details and reporting, particularly by including specific references to the House of Representatives and the committee's findings. This change matters because it ensures transparency in the legislative process, allowing members of the General Assembly and the public to clearly understand the bill's progress and backing. Additionally, the updates eliminate unnecessary repetitions in the bill title, streamlining the document for easier reading and comprehension.

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General Assembly Raised Bill No.
House of Representatives General Assembly File No.
5128 February Session, 2026 LCO No.
233 February Session, 2026 Substitute House Bill No.
1124 Referred to Committee on GENERAL LAW Introduced by:
5128 House of Representatives, March 30, 2026 The Committee onGeneralLawreportedthrough REP.LEMAR of the 96th Dist., Chairperson of the Committee on the part of the House, that the substitute bill ought to pass.
(GL) AN ACT CONCERNING DIRECT-TO-CONSUMER GENETIC TESTING.
AN ACT CONCERNING DIRECT-TO-CONSUMER GENETIC TESTING.
(3) "De-identified data" means any data that cannot reasonably be used to infer information about, or otherwise be linked to, an identified or identifiable individual if the direct-to-consumer genetic testing company that possesses such data (A) takes administrative and technical measures to ensure that such data cannot be associated with an individual, (B) publicly commits to possess and use such data exclusively in de-identified form and not to attempt to reidentify such data, and (C) contractually obligates any recipient of such data to satisfy LCO No.
(3) "De-identified data" means any data that cannot reasonably be used to infer information about, or otherwise be linked to, an identified or identifiable individual if the direct-to-consumer genetic testing company that possesses such data (A) takes administrative and technical measures to ensure that such data cannot be associated with an individual, (B) publicly commits to possess and use such data sHB5128 / File No.
1124 1 of 6 Raised Bill No.5128 the criteria set forth in subparagraphs (A) and (B) of this subdivision;
233 1 sHB5128 File No.
(4) "Direct-to-consumer genetic testing company" or "company" means any person doing business in this state who, in the ordinary courseofsuch business, (A)offersgenetictesting directlyto a consumer, or (B) collects, uses or analyzes genetic data that a consumer has provided to such person;
233 exclusively in de-identified form and not to attempt to reidentify such data, and (C) contractually obligates any recipient of such data to satisfy the criteria set forth in subparagraphs (A) and (B) of this subdivision;
(4) "Direct-to-consumer genetic testing company" or "company" (A) means any person doing business in this state who, in the ordinary course of such business, (i) offers genetic testing directly to a consumer, or (ii) collects, uses or analyzes genetic data that a consumer has provided to such person, and (B) does not include any individual who (i) is licensed by this state to provide health care services, and (ii) while acting within the scope of such individual's practice, orders genetic testing for a medical purpose;
and (9) "Person" means any individual, association, corporation, limited liability company, partnership, trust or other legal entity.
and sHB5128 / File No.
LCO No.
233 2 sHB5128 File No.
1124 2 of 6 Raised Bill No.5128 Sec.
233 (9) "Person" means any individual, association, corporation, limited liability company, partnership, trust or other legal entity.
Sec.
(1) At all times transact its business and conduct its affairs in a manner that isconsistent with a consumer'srightsunder section2ofthis act;
(1) At all times transact its business and conduct its affairs in a manner that isconsistent withaconsumer'srightsunder section2ofthis act;
(4) Prior to collecting, using or disclosing a consumer's genetic data, obtain the consumer's express consent for such collection, use or disclosure after disclosing to such consumer (A) the company's policies and procedures concerning use of the genetic data such company collects from consumers, (B) the identity of each person who may access the results of genetic testing performed by the company, including, but not limited to, any vendor or service provider for such company who may access such results, and (C) the manner in which the company may LCO No.
(4) Prior to collecting, using or disclosing a consumer's genetic data, obtain the consumer's express consent for such collection, use or disclosure after disclosing to such consumer (A) the company's policies and procedures concerning use of the genetic data such company collects from consumers, (B) the identity of each person who may access the results of genetic testing performed by the company, including, but sHB5128 / File No.
1124 3 of 6 Raised Bill No.5128 disclose such consumer's genetic data;
233 3 sHB5128 File No.
(5) In addition to the express consent required under subdivision (4) of this subsection, separately obtain a consumer's express consent to (A) disclose or transfer theconsumer's genetic data to any person other than a vendor or service provider for the company prior to disclosing or transferring such genetic data to such person, (B) use the consumer's genetic data for any purpose other than the primary purpose for which the company offered genetic testing directly to such consumer prior to using such genetic data for such other purpose, or (C) retain the consumer's biological sample for any period following completion of the genetic testing for which such consumer provided such biological sample prior to retaining such biological sample for such period;
233 not limited to, any vendor or service provider for such company who may access such results, and (C) the manner in which the company may disclose such consumer's genetic data;
(5) In addition to the express consent required under subdivision (4) of this subsection, separately obtain a consumer's express consent to (A) disclose or transfer theconsumer's genetic data to any person other than a vendor or service provider for the company, prior to disclosing or transferring such genetic data to such person, (B) use the consumer's genetic data for any purpose other than the primary purpose for which the company offered genetic testing directly to such consumer, prior to using such genetic data for such other purpose, or (C) retain the consumer's biological sample for any period following completion of the genetic testing for which such consumer provided such biological sample, prior to retaining such biological sample for such period;
(8) Not disclose a consumer's genetic data to (A) the consumer's employer, (B) any person who, in the ordinary course of business, (i) offers health insurance, life insurance or long-term care insurance coverage in this state or any other state, or (ii) provides information or data to any insurer, as defined in section 38a-1 of the general statutes, health care center, as defined in section 38a-175 of the general statutes, or fraternal benefit society, as described in section 38a-595 of the general statutes, for purposes of underwriting or rating of risks, or (C) any third LCO No.
(8) Not disclose a consumer's genetic data to (A) the consumer's employer, (B) any person who, in the ordinary course of business, (i) offers health insurance, life insurance or long-term care insurance coverage in this state or any other state, or (ii) provides information or data to any insurer, as defined in section 38a-1 of the general statutes, health care center, as defined in section 38a-175 of the general statutes, or fraternal benefit society, as described in section 38a-595 of the general statutes, for purposes of underwriting or rating of risks, or (C) any third sHB5128 / File No.
1124 4 of 6 Raised Bill No.
233 4 sHB5128 File No.
5128 party which the company knows, or reasonably should know, intends to use such genetic data for purposes of marketing, including, but not limited to, targeted advertising;
233 party which the company knows, or reasonably should know, intends to use such genetic data for purposes of marketing, including, but not limited to, targeted advertising;
3 October 1, 2026 New section Statement of Purpose:
3 October 1, 2026 New section GL Joint Favorable Subst.
To (1) provide that a consumer has a property right in, and retains the right to exercise exclusive control over, (A) any biological sample that is derived from the consumer's body and provided to, or used by, a direct- to-consumer genetic testing company, and (B) the results of any genetic testing conducted on the consumer's DNA by a direct-to-consumer genetic testing company, and (2) specify various duties and limitations applicable to direct-to-consumer genetic testing companies.
sHB5128 / File No.
LCO No.
233 5 sHB5128 File No.
1124 5 of 6 Raised Bill No.
233 The following Fiscal Impact Statement and Bill Analysis are prepared for the benefit of the members of the General Assembly, solely for purposes of information, summarization and explanation and do not represent the intent of the General Assembly or either chamber thereof for any purpose.
5128 [Proposed deletions are enclosed in brackets.
In general, fiscal impacts are based upon a variety of informational sources, including the analyst’s professional knowledge.
Proposed additions are indicated by underline, except that when the entire text of a bill or resolution or a section of a bill or resolution is new, it is not underlined.] LCO No.
Whenever applicable, agency data is consulted as part of the analysis, however final products do not necessarily reflect an assessment from any specific department.
1124 6 of 6
OFA Fiscal Note State Impact:
None Municipal Impact:
None Explanation The bill makes various changes to direct-to-consumer genetic testing laws and makes violations an unfair trade practice resulting in no fiscal impact to the state.
The Department of Consumer Protection (DCP) enforces unfair trade practice violations and has the expertise and resources to meet the requirements of the bill.
The Out Years State Impact:
None Municipal Impact:
None sHB5128 / File No.
233 6 sHB5128 File No.
233 OLR Bill Analysis sHB 5128 AN ACT CONCERNING DIRECT-TO-CONSUMER GENETIC TESTING.
SUMMARY This bill gives consumers a property right and exclusive control over:
1.
their biological samples (material from a person’s body known to contain DNA including tissue, blood, urine, and saliva) that are givento orused by adirect-to-consumer genetictesting company and 2.
results from genetic testing by these companies on their DNA.
This includes the right of control over the collection, use, retention, maintenance, disclosure, and destruction of a consumer’s biological sample and results.
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The bill requires direct-to-consumer genetic testing companies to conduct their business and affairs consistent with these rights.
Additionally, the bill requires these companies to (1) disclose certain policies and procedures to consumers and (2) get a consumer’s consent for various uses of their genetic data.
The bill prohibits companies from disclosing the results of genetic testing on a consumer’s DNA to anyone other than the consumer unless the consumer expressly consents to the disclosure, or it is disclosed to someone under a court order, warrant, or subpoena.
The bill also requires companies to have security procedures and certain processes to let consumers take certain actions.
Violations of the bill’s provisions are deemed an unfair or deceptive trade practice under the Connecticut Unfair Trade Practices Act sHB5128 / File No.
233 7 sHB5128 File No.
233 (CUTPA) (see BACKGROUND).
EFFECTIVE DATE:
October 1, 2026 SCOPE OF THE BILL Direct-to-Consumer Genetic Testing Companies The bill applies to “direct-to-consumer genetic testing companies,” which are individuals or entities that, in the ordinary course of business in Connecticut, offer genetic testing directly to a consumer or collect, use, or analyze genetic data given by a consumer.
The term does not include a licensed health care services provider who, within the provider’s scope of practice, orders genetic testing for a medical purpose.
Genetic Testing The bill defines “genetic testing” as (1) a lab test of a person’s complete DNA sequence or a DNA region, chromosome, gene, or gene product to determine the presence or absence of a genetic characteristic and (2) an interpretation of genetic data.
Genetic Data The bill applies to “genetic data,” which is data in any format about an individual’s genetic characteristics.
It includes:
1.
raw sequence data that results from sequencing all or part of a person’s DNA;
2.
genotypic (a person’s unique sequence of DNA) or phenotypic (a person’s observable characteristics) information from analyzing raw sequence data;
and 3.
information that (a) is about a person’s health condition, (b) the person gives the company, or (c) the company analyzes related to raw sequence data and uses for scientific research or product development.
It does not include de-identified data, which is data that cannot sHB5128 / File No.
233 8 sHB5128 File No.
233 reasonably be used to infer information about, or be linked to, an individual as long as the company that has the data (1) takes administrative and technical steps to make sure it cannot be associated with an individual, (2) publicly commits to have and use it only in de- identifiedformand doesnot reidentify it,and(3)contractually obligates any recipient of the data to do the same.
POLICY DISCLOSURES The bill requires companies to:
1.
disclose their policies and procedures on the collection, use, and disclosure of genetic data before taking a consumer’s biological sample, genetic data, or payment;
and 2.
prominently display a privacy notice on their websites with their policies and procedures on the collection, use, access, disclosure, transfer, security, retention, and deletion of a consumer’s data and consent.
CONSENT REQUIREMENTS Collecting, Using, or Disclosing Genetic Data The bill requires companies to get a consumer’s express consent to collect, use, or disclose the consumer’s genetic data.
Before doing so, companies must disclose to the consumer:
1.
their policies and procedures on using consumers’ genetic data they collect;
2.
each person who may access the results of genetic testing they perform, including vendors or service providers;
and 3.
how the company may disclose the consumer’s genetic data.
Express consent under the bill requires the consumer to affirmatively respond to a clear, meaningful, and prominent notice about collecting, using, retaining, or disclosing the consumer’s genetic data for a specific purpose.
sHB5128 / File No.
233 9 sHB5128 File No.
233 Transferring Genetic Data, Using It for Other Purposes, and Retaining Samples The bill requires a company to get a separate express consent before:
1.
disclosing or transferring genetic data to anyone other than a vendor or service provider, 2.
using the genetic data for any purpose other than the primary purpose the company gave to the consumer, or 3.
retaining a consumer’s biological sample after completing genetic testing.
Research Purposes The bill requires a company to get the consumer’s informed consent in compliance with federal regulations on human subjects to disclose or transfer genetic data to a third party for research purposes or research done under the company’s control for publication or generalized knowledge.
PROHIBITED DISCLOSURES The bill prohibits a company from disclosing a consumer’s genetic data to:
1.
the consumer’s employer;
2.
someone who in the ordinary course of business offers health, life, or long-term care insurance or provides information to an insurer, health care center, or fraternal benefit society for underwriting or rating risks;
or 3.
a third party the company knows or reasonably should know intends to use it for marketing, including targeted advertising.
SECURITY AND COMPANY PROCEDURES The bill requires companies to have reasonable security measures to protect consumers’ biological samples and genetic data from unauthorized access, destruction, use, modification, or disclosure.
It sHB5128 / File No.
233 10 sHB5128 File No.
233 also requires companies to have procedures that allow consumers to:
1.
access their genetic data;
2.
require the company to delete their genetic data or destroy, and confirm destruction of, their biological samples;
and 3.
revokeconsentforusingtheirgeneticdataforresearch,including by a third party.
BACKGROUND Connecticut Unfair Trade Practices Act (CUTPA) By law, CUTPA prohibits businesses from engaging in unfair and deceptive acts or practices.
It allows the Department of Consumer Protection commissioner, under specified procedures, to issue regulations defining an unfair trade practice, investigate complaints, issue cease and desist orders, order restitution in cases involving less than $10,000, impose civil penalties of up to $5,000, enter into consent agreements, ask the attorney generalto seek injunctive relief, and accept voluntary statements of compliance.
It also allows individuals to sue.
Courts may issue restraining orders;
award actual and punitive damages, costs, and reasonable attorney’s fees;
and impose civil penalties of up to $5,000 for willful violations and up to $25,000 for a restraining order violation.
COMMITTEE ACTION General Law Committee Joint Favorable Substitute Yea 20 Nay 0 (03/11/2026) sHB5128 / File No.
233 11
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Action History

  1. FILE NO. 233

  2. HOUSE CALENDAR NUMBER 189

  3. FAV. RPT., TABLED FOR HOUSE CALENDAR

  4. RPTD. OUT OF LCO

  5. REFERRED TO Office of Legislative Research AND Office of Fiscal Analysis 03/30/26

  6. FILED WITH LCO

  7. Joint Favorable Substitute

  8. PUBLIC HEARING 0218

  9. REF. TO JOINT COMM. ON General Law

Sponsorship breakdown

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0 sponsors · 0 co-sponsors · 187 not signed on

Sponsors (0)

None.

Co-sponsors (0)

None.

Not signed on (187)

187 members have not signed on to this bill.

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"Not signed on" means a member has not sponsored or co-sponsored this bill — it does not imply opposition. Members flagged Voted No have a recorded No vote on this bill.

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Subjects

healthcare technology
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