Genetic Information Nondiscrimination Act of 2008 (P.L. 110-233)
Genetic Information Nondiscrimination Act of 2008 (P.L. 110-233)
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- LanguageEnglish
H.R. 493, Enrolled Bill
[P.L. 110-233, Genetic Information Nondiscrimination Act of 2008, enacted on 5/15/2008.]
H.R. 493
One Hundred Tenth Congress
of the
United States of America
AT THE SECOND SESSION
Begun and held at the City of Washington on Thursday, the third day of January, two thousand and eight
An Act
To prohibit discrimination on the basis of genetic information with respect to health insurance and employment.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) SHORT TITLE.--This Act may be cited as the "Genetic Information Nondiscrimination Act of 2008".
(b) TABLE OF CONTENTS.--The table of contents of this Act is as follows:
Sec. 1. Short title; table of contents.
Sec. 2. Findings.
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Sec. 103. Amendments to the Internal Revenue Code of 1986.
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Sec. 209. Construction
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SEC. 2. FINDINGS.
Congress makes the following findings:
(2) The early science of genetics became the basis of State laws that provided for the sterilization of persons having presumed genetic "defects" such as mental retardation, mental disease, epilepsy, blindness, and hearing loss, among other conditions. The first sterilization law was enacted in the State of Indiana in 1907. By 1981, a majority of States adopted sterilization laws to "correct" apparent genetic traits or tendencies. Many of these State laws have since been repealed, and many have been modified to include essential constitutional requirements of due process and equal protection. However, the current explosion in the science of genetics, and the history of sterilization laws by the States based on early genetic science, compels Congressional action in this area.
(3) Although genes are facially neutral markers, many genetic conditions and disorders are associated with particular racial and ethnic groups and gender. Because some genetic traits are most prevalent in particular groups, members of a particular group may be stigmatized or discriminated against as a result of that genetic information. This form of discrimination was evident in the 1970s, which saw the advent of programs to screen and identify carriers of sickle cell anemia, a disease which afflicts African-Americans. Once again, State legislatures began to enact discriminatory laws in the area, and in the early 1970s began mandating genetic screening of all African Americans for sickle cell anemia, leading to discrimination and unnecessary fear. To alleviate some of this stigma, Congress in 1972 passed the National Sickle Cell Anemia Control Act, which withholds Federal funding from States unless sickle cell testing is voluntary.
(4) Congress has been informed of examples of genetic discrimination in the workplace. These include the use of pre- employment genetic screening at Lawrence Berkeley Laboratory, which led to a court decision in favor of the employees in that case Norman-Bloodsaw v. Lawrence Berkeley Laboratory (135 F.3d 1260, 1269 (9th Cir. 1998)). Congress clearly has a compelling public interest in relieving the fear of discrimination and in prohibiting its actual practice in employment and health insurance.
(5) Federal law addressing genetic discrimination in health insurance and employment is incomplete in both the scope and depth of its protections. Moreover, while many States have enacted some type of genetic non-discrimination law, these laws vary widely with respect to their approach, application, and level of protection. Congress has collected substantial evidence that the American public and the medical community find the existing patchwork of State and Federal laws to be confusing and inadequate to protect them from discrimination. Therefore Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.
SEC. 103. AMENDMENTS TO THE INTERNAL REVENUE CODE OF 1986.
(a) NO DISCRIMINATION IN GROUP PREMIUMS BASED ON GENETIC INFORMATION.--Subsection (b) of section 9802 of the Internal Revenue Code of 1986 is amended--
(1) in paragraph (2)(A), by inserting before the semicolon the following: "except as provided in paragraph (3)"; and
(2) by adding at the end the following:
"(3) NO GROUP-BASED DISCRIMINATION ON BASIS OF GENETIC INFORMATION.--
"(A) IN GENERAL.--For purposes of this section, a group health plan may not adjust premium or contribution amounts for the group covered under such plan on the basis of genetic information.
"(B) RULE OF CONSTRUCTION.--Nothing in subparagraph (A) or in paragraphs (1) and (2) of subsection (d) shall be construed to limit the ability of a group health plan to increase the premium for an employer based on the manifestation of a disease or disorder of an individual who is enrolled in the plan. In such case, the manifestation of a disease or disorder in one individual cannot also be used as genetic information about other group members and to further increase the premium for the employer.".
"(c) GENETIC TESTING.--
"(1) LIMITATION ON REQUESTING OR REQUIRING GENETIC TESTING.--A group health plan may 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 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 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 may request only the minimum amount of information necessary to accomplish the intended purpose.
"(4) RESEARCH EXCEPTION.--Notwithstanding 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) 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 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 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 notifies the Secretary in writing that the plan is conducting activities pursuant to the exception 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 conducted under this paragraph.
"(1) IN GENERAL.--A group health plan shall not request, require, or purchase genetic information for underwriting purposes (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) INCIDENTAL 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 9801 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 FETUS OR EMBRYO.--Such section is further amended by adding at the end the following:
"(f) GENETIC INFORMATION OF A FETUS OR EMBRYO.--Any reference in this chapter 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.".
(d) DEFINITIONS.--Subsection (d) of section 9832 of such Code is amended by adding at the end the following:
"(6) FAMILY MEMBER.--The term 'family member' means, with respect to any individual--
"(A) a dependent (as such term is used for purposes of section 9801(f)(2)) of such individual, and
"(B) any other individual who is a first-degree, second- degree, third-degree, or fourth-degree relative of such individual or of an individual described in subparagraph (A).
"(7) GENETIC INFORMATION.--
"(A) IN GENERAL.--The term 'genetic information' means, with respect to any individual, information about--
"(i) such individual's genetic tests,
"(ii) the genetic tests of family members of such individual, and
"(iii) the manifestation of a disease or disorder in family members of such individual.
"(B) INCLUSION OF GENETIC SERVICES AND PARTICIPATION IN GENETIC RESEARCH.--Such term includes, with respect to any individual, any request for, or receipt of, genetic services, or participation in clinical research which includes genetic services, by such individual or any family member of such individual.
"(C) EXCLUSIONS.--The term 'genetic information' shall not include information about the sex or age of any individual.
"(8) GENETIC TEST.--
"(A) IN GENERAL.--The term 'genetic test' means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, or chromosomal changes.
"(B) EXCEPTIONS.--The term 'genetic test' does not mean--
"(i) an analysis of proteins or metabolites that does not detect genotypes, mutations, or chromosomal changes, or
"(ii) an analysis of proteins or metabolites that is directly related to a manifested disease, disorder, or pathological condition that could reasonably be detected by a health care professional with appropriate training and expertise in the field of medicine involved.
"(A) a genetic test;
"(B) genetic counseling (including obtaining, interpreting, or assessing genetic information); or
"(C) genetic education.
"(10) UNDERWRITING PURPOSES.--The term 'underwriting purposes' means, with respect to any group health plan, or health insurance coverage offered in connection with a group health plan--
"(A) rules for, or determination of, eligibility (including enrollment and continued eligibility) for benefits under the plan or coverage;
"(B) the computation of premium or contribution amounts under the plan or coverage;
"(C) the application of any pre-existing condition exclusion under the plan or coverage; and
"(D) other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.".
(1) IN GENERAL.--Subchapter C of chapter 100 of the Internal Revenue Code of 1986 (relating to general provisions) is amended by adding at the end the following new section:
"For the imposition of tax on any failure of a group health plan to meet the requirements of this chapter, see section 4980D.".
(2) CONFORMING AMENDMENT.--The table of sections for subchapter C of chapter 100 of such Code is amended by adding at the end the following new item:
(f) REGULATIONS AND EFFECTIVE DATE.--
(1) REGULATIONS.--The Secretary of the Treasury shall issue final regulations or other guidance not later than 12 months after the date of the enactment of this Act to carry out the amendments made by this section.
(2) EFFECTIVE DATE.--The amendments made by this section shall apply with respect to group health plans for plan years beginning after the date that is 1 year after the date of the enactment of this Act.
TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC INFORMATION
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SEC. 209. CONSTRUCTION.
(a) IN GENERAL.--Nothing in this title shall be construed to--
(1) limit the rights or protections of an individual under any other Federal or State statute that provides equal or greater protection to an individual than the rights or protections provided for under this title, including the protections of an individual under the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.) (including coverage afforded to individuals under section 102 of such Act (42 U.S.C. 12112)), or under the Rehabilitation Act of 1973 (29 U.S.C. 701 et seq.);
(2)(A) limit the rights or protections of an individual to bring an action under this title against an employer, employment agency, labor organization, or joint labor-management committee for a violation of this title; or
(B) provide for enforcement of, or penalties for violation of, any requirement or prohibition applicable to any employer, employment agency, labor organization, or joint labor-management committee subject to enforcement for a violation under--
(i) the amendments made by title I of this Act;
(ii)(I) subsection (a) of section 701 of the Employee Retirement Income Security Act of 1974 as such section applies with respect to genetic information pursuant to subsection (b)(1)(B) of such section;
(II) section 702(a)(1)(F) of such Act; or
(III) section 702(b)(1) of such Act as such section applies with respect to genetic information as a health status-related factor;
(iii)(I) subsection (a) of section 2701 of the Public Health Service Act as such section applies with respect to genetic information pursuant to subsection (b)(1)(B) of such section;
(II) section 2702(a)(1)(F) of such Act; or
(III) section 2702(b)(1) of such Act as such section applies with respect to genetic information as a health status- related factor; or
(iv)(I) subsection (a) of section 9801 of the Internal Revenue Code of 1986 as such section applies with respect to genetic information pursuant to subsection (b)(1)(B) of such section;
(II) section 9802(a)(1)(F) of such Act; or
(III) section 9802(b)(1) of such Act as such section applies with respect to genetic information as a health status- related factor;
(4) limit or expand the protections, rights, or obligations of employees or employers under applicable workers' compensation laws;
(5) limit the authority of a Federal department or agency to conduct or sponsor occupational or other health research that is conducted in compliance with the regulations contained in part 46 of title 45, Code of Federal Regulations (or any corresponding or similar regulation or rule);
(6) limit the statutory or regulatory authority of the Occupational Safety and Health Administration or the Mine Safety and Health Administration to promulgate or enforce workplace safety and health laws and regulations; or
(7) require any specific benefit for an employee or member or a family member of an employee or member under any group health plan or health insurance issuer offering group health insurance coverage in connection with a group health plan.
(b) GENETIC INFORMATION OF A FETUS OR EMBRYO.--Any reference in this title 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.
(c) RELATION TO AUTHORITIES UNDER TITLE I.--With respect to a group health plan, or a health insurance issuer offering group health insurance coverage in connection with a group health plan, this title does not prohibit any activity of such plan or issuer that is authorized for the plan or issuer under any provision of law referred to in clauses (i) through (iv) of subsection (a)(2)(B).
Speaker of the House of Representatives.
Vice President of the United States and President of the Senate.
- Jurisdictions
- LanguageEnglish
