U.S Code last checked for updates: Nov 22, 2024
§ 300gg–53.
Prohibition of health discrimination on the basis of genetic information
(a)
Prohibition on genetic information as a condition of eligibility
(1)
In general
(2)
Rule of construction
(b)
Prohibition on genetic information in setting premium rates
(1)
In general
(2)
Rule of construction
(c)
Prohibition on genetic information as preexisting condition
(1)
In general
(2)
Rule of construction
(d)
Genetic testing
(1)
Limitation on requesting or requiring genetic testing
(2)
Rule of construction
(3)
Rule of construction regarding payment
(A)
In general
(B)
Limitation
(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
(2)
Prohibition on collection of genetic information prior to enrollment
(3)
Incidental collection
(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.
(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.)
cite as: 42 USC 300gg-53