12 2 STA T .897PUBLIC LA W 11 0– 2 3 3 —M A Y 21 , 2008 ‘ ‘ (B)LIM I TA TI ON.—Forpu rpo se so f su b p a ra g rap h ( A ) , a group hea lt h pla nm a y re q uest only the m i nimum amount of information ne c essary to accomplish the inten d ed pur - pose. ‘‘( 4 ) RES EA RCH E X CE P TION.— N ot w ithstanding paragraph ( 1 ), 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) T he request is made pursuant to research that complies with part 4 6 of title 4 5 , C ode of Federal Regula- tions, or equi v alent Federal regulations, and any applicable S tate or local law or regulations for the protection of human sub j ects in research. ‘‘(B) The plan 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 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 notifies the Secretary in writing that the plan is conducting activities pursuant to the e x ception provided for under this paragraph, including a description of the activities conducted. ‘‘( E ) The plan complies with such other conditions as the Secretary may by regulation require for activities con- ducted under this paragraph. ‘‘(d) P ROHI B ITION ON CO L LECTION O FG ENETIC I NFORMATION.— ‘‘(1) IN G ENERAL.—A group health plan shall not request, require, or purchase genetic information for underwriting pur- poses (as defined in section 9832 ). ‘‘(2) PROHIBITION ON COLLECTION OF GENETIC INFORMATION PRIOR TO ENROLLMENT.—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 in connection with such enrollment. ‘‘(3) INCI D ENTAL COLLECTION.—If a group health plan 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). ‘‘(e) APPLICATION TO ALL PLANS.—The provisions of subsections (a)(1)(F), (b)(3), (c), and (d) and subsection (b)(1) and section 98 0 1 with respect to genetic information, shall apply to group health plans without regard to section 9831(a)(2).’’. (c) APPLICATION TO GENETIC INFORMATION OF A FET U SOR EMBR Y O.—Such section is further amended by adding at the end the following: ‘‘(f) GENETIC INFORMATION OF A FETUS OR EMBRYO.—Any ref- erence in this chapter to genetic information concerning an indi- vidual 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 Notif i ca tio n.
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