42 U.S.C. § 300gg–53 — Prohibition of health discrimination on the basis of genetic information

submitted 82 years ago by Pub. L. 110-233 to r/title-42-THE-PUBLIC-HEALTH-AND-WELFARE · 1,041 words · no verdicts yet

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Insurers selling individual health coverage can't use genetic information for eligibility or premiums. They also can't use it for preexisting-condition exclusions. They can't require genetic tests or collect genetic information for underwriting.

(a) Prohibition on genetic information as a condition of eligibility (1) In general: An insurer offering individual health coverage can't base eligibility rules — including continued eligibility — for enrolling in that coverage on genetic information. (2) Rule of construction: This doesn't stop an insurer from setting eligibility rules based on the actual manifestation of a disease or disorder in the individual, or in a covered family member. (b) Prohibition on genetic information in setting premium rates (1) In general: An insurer can't adjust an individual's premium or contribution amount based on genetic information about that individual or a family member. (2) Rule of construction: The insurer can still adjust premiums based on the actual manifestation of a disease or disorder in the individual or a covered family member. But the manifestation of a disease in one covered person can't then be used as "genetic information" to further raise premiums for other people covered on the same policy. (c) Prohibition on genetic information as preexisting condition (1) In general: An insurer can't impose a preexisting-condition exclusion (as defined in section 2701(b)(1)(A)) based on genetic information. (2) Rule of construction: The insurer can still impose a preexisting-condition exclusion based on the actual manifestation of a disease or disorder in the individual. (d) Genetic testing (1) Limitation on requesting or requiring genetic testing: An insurer can't request or require an individual, or a family member of that individual, to undergo a genetic test. (2) Rule of construction: This doesn't limit a treating health care professional's authority to ask their own patient to undergo a genetic test. (3) Rule of construction regarding payment (A) In general: An insurer can still obtain and use genetic test results to make a payment determination — under the HIPAA payment-related regulations — as long as this is consistent with subsections (a) and (c). (B) Limitation: When doing so, the insurer may request only the minimum amount of information necessary for that purpose. (4) Research exception: Despite paragraph (1), an insurer may request — but not require — that an individual or family member undergo a genetic test for research, but only if every one of these conditions is met: (A) the request follows research rules under 45 CFR part 46 (or equivalent federal rules) and any applicable state or local human-subjects law; (B) the insurer clearly tells the individual, or a minor's legal guardian, that answering is voluntary and that not answering won't affect enrollment status, premiums, or contributions; (C) none of the genetic information collected this way may be used for underwriting; (D) the insurer notifies the Secretary in writing that it's conducting this activity, describing it; and (E) the insurer follows any other conditions the Secretary requires by regulation. (e) Prohibition on collection of genetic information (1) In general: An insurer can't request, require, or purchase genetic information for underwriting purposes (as defined in section 300gg–91). (2) Prohibition on collection of genetic information prior to enrollment: An insurer can't request, require, or purchase genetic information about an individual before that individual enrolls, in connection with that enrollment. (3) Incidental collection: If an insurer gets genetic information incidentally while requesting, requiring, or purchasing other information, that's not a violation of paragraph (2) — as long as the request, requirement, or purchase itself doesn't violate paragraph (1). (f) Genetic information of a fetus or embryo: Anywhere this part refers to genetic information about an individual or family member, that includes (1) for a pregnant woman, genetic information about any fetus she's carrying, and (2) for someone using assisted reproductive technology, genetic information about any embryo they legally hold.

the actual law source: uscode.house.gov ↗public domain

(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.

(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)) 1 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 2 (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.

Source credit: (July 1, 1944, ch. 373, title XXVII, § 2753, as added Pub. L. 110–233, title I, § 102(b)(1)(B), May 21, 2008, 122 Stat. 893.)

history & why it existsrecord from the source credit

1944Enacted · Pub. L. 110-233 · 122 Stat. 893

A history note hasn’t been published yet. The record shows enactment by Pub. L. 110-233 on 1944-07-01.

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