(1) Limitation on requesting or requiring genetic testing A group health plan, and a health insurance issuer offering health insurance coverage in connection with a group health plan, shall not request or require an individual or a family member of such individual to undergo a genetic test.
(3) Rule of construction regarding payment
(A) In general Nothing in paragraph (1) shall be construed to preclude a group health plan, or a health insurance issuer offering health insurance coverage in connection with a group health plan, 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 of Health and Human Services 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).
(B) Limitation For purposes of subparagraph (A), a group health plan, or a health insurance issuer offering health insurance coverage in connection with a group health plan, may request only the minimum amount of information necessary to accomplish the intended purpose.
(4) Research exception Notwithstanding paragraph (1), a group health plan, or a health insurance issuer offering health insurance coverage in connection with a group health plan, may request, but not require, that a participant or beneficiary undergo a genetic test if each of the following conditions is met:
(A) The request is made, in writing, 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 plan or issuer clearly indicates to each participant or beneficiary, or in the case of a minor child, to the legal guardian of such beneficiary, 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 plan or issuer notifies the Secretary in writing that the plan or issuer is conducting activities pursuant to the exception provided for under this paragraph, including a description of the activities conducted.
(E) The plan or issuer complies with such other conditions as the Secretary may by regulation require for activities conducted under this paragraph.