12 2 STA T .8 8 4PUBLIC LA W 11 0– 2 3 3 —M A Y 21 , 2008 Secr e ta r yofH ea l t h a nd H um an Ser vi ce s under p art C of title XI of the Social Security A ct and section 264 of the Health Insurance P orta b ility and Accountability Act of 19 96 , as may be revised from time to time ) consistent w ith subsection ( a) .‘ ‘( B ) LIM I TA TI ON . —F or purposes of subpara g raph (A), a group health plan, or a health insurance issuer offering health insurance coverage in connection with a group health plan, may re q uest only the minimum amount of information necessary to accomplish the intended purpose. ‘‘(4) RES EA RCH E X CE P TION.— N otwithstanding 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 bene - ficiary undergo a genetic test if each of the following conditions is met
‘‘(A) T he request is made, in writing, pursuant to research that complies with part 46 of title 4 5 , Code of Federal Regulations, or equivalent Federal regulations, and any applicable State or local law or regulations for the protection of human sub j ects in research. ‘‘(B) The plan or issuer clearly indicates to each partici- pant 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 enroll- ment 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 tothee x ception provided for under this paragraph, including a description of the activities conducted. ‘‘( E ) The plan or issuer complies with such other condi- tions as the Secretary may by regulation require for activi- ties conducted under this paragraph. ‘‘(d) PROHI B ITION ON CO L LECTION O FG ENETIC INFORMATION.— ‘‘(1) IN G ENERAL.—A group health plan, and a health insur- ance issuer offering health insurance coverage in connection with a group health plan, shall not request, require, or purchase genetic information for underwriting purposes (as defined in section 73 3). ‘‘(2) PROHIBITION ON COLLECTION OF GENETIC INFORMATION PRIOR TO ENROLLMENT.—A group health plan, and a health insurance issuer offering health insurance coverage in connec- tion with a group health plan, shall not request, require, or purchase genetic information with respect to any individual prior to such individual ’ s enrollment under the plan or coverage in connection with such enrollment. ‘‘(3) INCI D ENTAL COLLECTION.—If a group health plan, or a health insurance issuer offering health insurance coverage in connection with a group health plan, obtains genetic informa- tion incidental to the requesting, requiring, or purchasing of other information concerning any individual, such request, requirement, or purchase shall not be considered a violation Notif i ca tio n.
�
