Title 42, The Public Health and WelfareRelease 119-110
§300gg–53 Prohibition of Health Discrimination on the Basis of Genetic Information
Title 42 › CHAPTER 6A — PUBLIC HEALTH SERVICE › SUBCHAPTER XXV — REQUIREMENTS RELATING TO HEALTH INSURANCE COVERAGE › Part B — Individual Market Rules › subpart 2 — other requirements › § 300gg–53
Summary
Health insurance companies that sell individual plans must not use a person’s genetic information to decide who can enroll, to set or raise their premiums, or to treat it as a preexisting condition. They also may not ask for or force someone (or their family member) to take a genetic test. If a disease is already present in a person or a family member covered on the policy, the insurer can use that actual illness to decide eligibility, premiums, or exclusions, but it cannot treat that illness as genetic information about other people on the same policy to charge them more. Insurers may use genetic test results for payment decisions in limited ways and may only ask for the smallest amount of information needed. For research, insurers may ask (but not require) tests if the study follows human-subject rules, participation is clearly voluntary and won’t affect enrollment or cost, results won’t be used for underwriting, the insurer gives written notice to the Secretary, and any extra rules the Secretary sets are followed. Genetic information = data about genes, test results, or family history. Underwriting = rules about who gets coverage and how much it costs. Manifestation = when a disease is actually present. For pregnant women, genetic info includes the fetus; for assisted reproduction, it includes embryos legally held.
Full Legal Text
Title 42, §300gg–53
The Public Health and Welfare, Source: USLM XML via OLRC
(a)Prohibition on genetic information as a condition of eligibility
(1)In general
A health insurance issuer offering health insurance coverage in the individual market may not establish rules for the eligibility (including continued eligibility) of any individual to enroll in individual health insurance coverage based on genetic information.
(2)Rule of construction
Nothing in paragraph (1) or in paragraphs (1) and (2) of subsection (e) shall be construed to preclude a health insurance issuer from establishing rules for eligibility for an individual to enroll in individual health insurance coverage based on the manifestation of a disease or disorder in that individual, or in a family member of such individual where such family member is covered under the policy that covers such individual.
(b)Prohibition on genetic information in setting premium rates
(1)In general
A health insurance issuer offering health insurance coverage in the individual market shall not adjust premium or contribution amounts for an individual on the basis of genetic information concerning the individual or a family member of the individual.
(2)Rule of construction
Nothing in paragraph (1) or in paragraphs (1) and (2) of subsection (e) shall be construed to preclude a health insurance issuer from adjusting premium or contribution amounts for an individual on the basis of a manifestation of a disease or disorder in that individual, or in a family member of such individual where such family member is covered under the policy that covers such individual. In such case, the manifestation of a disease or disorder in one individual cannot also be used as genetic information about other individuals covered under the policy issued to such individual and to further increase premiums or contribution amounts.
(c)Prohibition on genetic information as preexisting condition
(1)In general
A health insurance issuer offering health insurance coverage in the individual market may not, on the basis of genetic information, impose any preexisting condition exclusion (as defined in section 2701(b)(1)(A)) with respect to such coverage.
(2)Rule of construction
Nothing in paragraph (1) or in paragraphs (1) and (2) of subsection (e) shall be construed to preclude a health insurance issuer from imposing any preexisting condition exclusion for an individual with respect to health insurance coverage on the basis of a manifestation of a disease or disorder in that individual.
(d)Genetic testing
(1)Limitation on requesting or requiring genetic testing
A health insurance issuer offering health insurance coverage in the individual market shall not request or require an individual or a family member of such individual to undergo a genetic test.
(2)Rule of construction
Paragraph (1) shall not be construed to limit the authority of a health care professional who is providing health care services to an individual to request that such individual undergo a genetic test.
(3)Rule of construction regarding payment
(A)In general
Nothing in paragraph (1) shall be construed to preclude a health insurance issuer offering health insurance coverage in the individual market from obtaining and using the results of a genetic test in making a determination regarding payment (as such term is defined for the purposes of applying the regulations promulgated by the Secretary under part C of title XI of the Social Security Act [42 U.S.C. 1320d et seq.] and section 264 of the Health Insurance Portability and Accountability Act of 1996, as may be revised from time to time) consistent with subsection (a) and (c).
(B)Limitation
For purposes of subparagraph (A), a health insurance issuer offering health insurance coverage in the individual market may request only the minimum amount of information necessary to accomplish the intended purpose.
(4)Research exception
Notwithstanding paragraph (1), a health insurance issuer offering health insurance coverage in the individual market may request, but not require, that an individual or a family member of such individual undergo a genetic test if each of the following conditions is met:
(A)The request is made pursuant to research that complies with part 46 of title 45, Code of Federal Regulations, or equivalent Federal regulations, and any applicable State or local law or regulations for the protection of human subjects in research.
(B)The issuer clearly indicates to each individual, or in the case of a minor child, to the legal guardian of such child, to whom the request is made that—
(i)compliance with the request is voluntary; and
(ii)non-compliance will have no effect on enrollment status or premium or contribution amounts.
(C)No genetic information collected or acquired under this paragraph shall be used for underwriting purposes.
(D)The issuer notifies the Secretary in writing that the issuer is conducting activities pursuant to the exception provided for under this paragraph, including a description of the activities conducted.
(E)The issuer complies with such other conditions as the Secretary may by regulation require for activities conducted under this paragraph.
(e)Prohibition on collection of genetic information
(1)In general
A health insurance issuer offering health insurance coverage in the individual market shall not request, require, or purchase genetic information for underwriting purposes (as defined in section 300gg–91 of this title).
(2)Prohibition on collection of genetic information prior to enrollment
A health insurance issuer offering health insurance coverage in the individual market shall not request, require, or purchase genetic information with respect to any individual prior to such individual’s enrollment under the plan in connection with such enrollment.
(3)Incidental collection
If a health insurance issuer offering health insurance coverage in the individual market obtains genetic information incidental to the requesting, requiring, or purchasing of other information concerning any individual, such request, requirement, or purchase shall not be considered a violation of paragraph (2) if such request, requirement, or purchase is not in violation of paragraph (1).
(f)Genetic information of a fetus or embryo
Any reference in this part to genetic information concerning an individual or family member of an individual shall—
(1)with respect to such an individual or family member of an individual who is a pregnant woman, include genetic information of any fetus carried by such pregnant woman; and
(2)with respect to an individual or family member utilizing an assisted reproductive technology, include genetic information of any embryo legally held by the individual or family member.
Legislative History
Notes & Related Subsidiaries
Editorial Notes
References in Text
section 2701, referred to in subsec. (c)(1), is a reference to section 2701 of act
July 1, 1944. section 2701, which was classified to section 300gg of this title, was renumbered section 2704, effective for plan years beginning on or after Jan. 1, 2014, with certain exceptions, and amended, by Pub. L. 111–148, title I, §§ 1201(2), 1563(c)(1), formerly § 1562(c)(1), title X, § 10107(b)(1), Mar. 23, 2010, 124 Stat. 154, 264, 911, and was transferred to section 300gg–3 of this title. A new section 2701 of act
July 1, 1944, related to fair health insurance premiums, was added, effective for plan years beginning on or after Jan. 1, 2014, and amended, by Pub. L. 111–148, title I, § 1201(4), title X, § 10103(a), Mar. 23, 2010, 124 Stat. 155, 892, and is classified to section 300gg of this title. The Social Security Act, referred to in subsec. (d)(3)(A), is act Aug. 14, 1935, ch. 531, 49 Stat. 620. Part C of title XI of the Act is classified generally to part C (§ 1320d et seq.) of subchapter XI of chapter 7 of this title. For complete classification of this Act to the Code, see section 1305 of this title and Tables. section 264 of the Health Insurance Portability and Accountability Act of 1996, referred to in subsec. (d)(3)(A), is section 264 of Pub. L. 104–191, which is set out as a note under section 1320d–2 of this title. Codification Another section 2753 of act
July 1, 1944, is classified to section 300gg–54 of this title.
Statutory Notes and Related Subsidiaries
Effective Date
Section applicable, with respect to group health plans and health insurance coverage offered in connection with group health plans, for plan years beginning after the date that is one year after
May 21, 2008, and, with respect to health insurance coverage offered, sold, issued, renewed, in effect, or operated in the individual market, after the date that is one year after
May 21, 2008, see section 102(d)(2) of Pub. L. 110–233, set out as an
Effective Date
of 2008 Amendment note under section 300gg–21 of this title.
Reference
Citations & Metadata
Citation
42 U.S.C. § 300gg–53
Title 42, The Public Health and Welfare
Last Updated
Sep 23, 2026
Release point: 119-110