Genetic Information Nondiscrimination Act of 2008
| Genetic Information Nondiscrimination Act of 2008 | |
|---|---|
| Short Title | GINA |
| Official Text | Genetic Information Nondiscrimination Act of 2008 |
| Country/Jurisdiction | United States |
| State or Province | |
| Regulatory Bodies | |
| Date Enacted | 2008/05/21 |
| Scope of the Law | Individuals, Employers, Health Care Providers, Health Insurance Issuer |
| Information | |
| Taxonomy | Decisional Interference, Disclosure, Exclusion, Interrogation, Secondary Use, Surveillance |
| Strategies | |
Genetic Information Nondiscrimination Act of 2008 limits the genetic testing procedures and prohibits collecting genetic information for other purposes from individuals.
Text of the law
SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY ACT OF 1974. Exclusion, Decisional Interference, Interrogation, Disclosure
(b) LIMITATIONS ON GENETIC TESTING; PROHIBITION ON COLLECTION OF GENETIC INFORMATION; APPLICATION TO ALL PLANS.—Section 702 of the Employee Retirement Income Security Act of 1974 (29 U.S.C. 1182) is amended by adding at the end the following:
‘‘(c) GENETIC TESTING.—
‘‘(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. Medical and Health, Preference "Personal#list" contains a listed "#" character as part of the property label and has therefore been classified as invalid.
‘‘(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.
‘‘(d) PROHIBITION ON COLLECTION OF GENETIC INFORMATION.—
‘‘(1) IN GENERAL.—A group health plan, and a health insurance 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 733). Credit "Personal#list" contains a listed "#" character as part of the property label and has therefore been classified as invalid.
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC INFORMATION PRIOR TO ENROLLMENT.—A group health plan, and a health insurance issuer offering health insurance coverage in connection 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) INCIDENTAL COLLECTION.—If a group health plan, or a health insurance issuer offering health insurance coverage in connection with 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).
(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 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 Medical and Health, Ethnicity, Family "Personal#list" contains a listed "#" character as part of the property label and has therefore been classified as invalid.
‘‘(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.’’.
SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.
‘‘(c) GENETIC TESTING.—
‘‘(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.
‘‘(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, 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 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, 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 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. Surveillance, Secondary Use
‘‘(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.
‘‘(d) PROHIBITION ON COLLECTION OF GENETIC INFORMATION.—
‘‘(1) IN GENERAL.—A group health plan, and a health insurance 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 2791).
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC INFORMATION PRIOR TO ENROLLMENT.—A group health plan, and a health insurance issuer offering health insurance coverage in connection 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) INCIDENTAL COLLECTION.—If a group health plan, or a health insurance issuer offering health insurance coverage in connection with 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).
(3) 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 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.’’.
‘‘SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE BASIS OF GENETIC INFORMATION.
‘‘(a) PROHIBITION ON GENETIC INFORMATION AS A CONDITION OF ELIGIBILITY.—
‘‘(1) IN GENERAL.—A health insurance issuer offering health insurance coverage in the individual market may not establish rules for the eligibility (including continued eligibility) of any individual to enroll in individual health insurance coverage based on genetic information.
‘‘(2) RULE OF CONSTRUCTION.—Nothing in paragraph (1) or in paragraphs (1) and (2) of subsection (e) shall be construed to preclude a health insurance issuer from establishing rules for eligibility for an individual to enroll in individual health insurance coverage based on the manifestation of a disease or disorder in that individual, or in a family member of such individual where such family member is covered under the policy that covers such individual.
‘‘(b) PROHIBITION ON GENETIC INFORMATION IN SETTING PREMIUM RATES.—
‘‘(1) IN GENERAL.—A health insurance issuer offering health insurance coverage in the individual market shall not adjust premium or contribution amounts for an individual on the basis of genetic information concerning the individual or a family member of the individual.
‘‘(2) RULE OF CONSTRUCTION.—Nothing in paragraph (1) or in paragraphs (1) and (2) of subsection (e) shall be construed to preclude a health insurance issuer from adjusting premium or contribution amounts for an individual on the basis of a manifestation of a disease or disorder in that individual, or in a family member of such individual where such family member is covered under the policy that covers such individual. In such case, the manifestation of a disease or disorder in one individual cannot also be used as genetic information about other individuals covered under the policy issued to such individual and to further increase premiums or contribution amounts.
‘‘(c) PROHIBITION ON GENETIC INFORMATION AS PREEXISTING CONDITION.—
‘‘(1) IN GENERAL.—A health insurance issuer offering health insurance coverage in the individual market may not, on the basis of genetic information, impose any preexisting condition exclusion (as defined in section 2701(b)(1)(A)) with respect to such coverage.
‘‘(2) RULE OF CONSTRUCTION.—Nothing in paragraph (1) or in paragraphs (1) and (2) of subsection (e) shall be construed to preclude a health insurance issuer from imposing any preexisting condition exclusion for an individual with respect to health insurance coverage on the basis of a manifestation of a disease or disorder in that individual.
‘‘(d) GENETIC TESTING.—
‘‘(1) LIMITATION ON REQUESTING OR REQUIRING GENETIC TESTING.—A health insurance issuer offering health insurance coverage in the individual market shall 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 health insurance issuer offering health insurance coverage in the individual market 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 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) and (c).
‘‘(B) LIMITATION.—For purposes of subparagraph (A), a health insurance issuer offering health insurance coverage in the individual market may request only the minimum amount of information necessary to accomplish the intended purpose.
‘‘(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.
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.—
A health insurance issuer offering health insurance coverage in the individual market shall not request, require, or purchase genetic information for underwriting purposes (as defined in section 2791).
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC INFORMATION PRIOR TO ENROLLMENT.—
A health insurance issuer offering health insurance coverage in the individual market shall not request, require, or purchase genetic information with respect to any individual prior to such individual’s enrollment under the plan in connection with such enrollment.
‘‘(3) INCIDENTAL COLLECTION.—
If a health insurance issuer offering health insurance coverage in the individual market 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). ‘‘(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.’’.
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.’’.
(b) LIMITATIONS ON GENETIC TESTING; PROHIBITION ON COLLECTION OF GENETIC INFORMATION; APPLICATION TO ALL PLANS.—
Section 9802 of such Code is amended by redesignating subsection (c) as subsection (f) and by inserting after subsection (b) the following new subsections:
‘‘(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.
‘‘(d) PROHIBITION ON COLLECTION OF GENETIC INFORMATION.—
‘‘(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).
(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.’’.
SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY ACT RELATING TO MEDIGAP.
(b) LIMITATIONS ON GENETIC TESTING AND GENETIC INFORMATION.—
(1) IN GENERAL.—Section 1882 of the Social Security Act (42 U.S.C. 1395ss) is amended by adding at the end the following:
‘‘(x) LIMITATIONS ON GENETIC TESTING AND INFORMATION.—
‘‘(1) GENETIC TESTING.—
‘‘(A) LIMITATION ON REQUESTING OR REQUIRING GENETIC TESTING.—An issuer of a medicare supplemental policy shall not request or require an individual or a family member of such individual to undergo a genetic test.
‘‘(B) RULE OF CONSTRUCTION.—Subparagraph (A) 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.
‘‘(C) RULE OF CONSTRUCTION REGARDING PAYMENT.—
‘‘(i) IN GENERAL.—Nothing in subparagraph (A) shall be construed to preclude an issuer of a medicare supplemental policy 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 under part C of title XI and section 264 of the Health Insurance Portability and Accountability Act of 1996, as may be revised from time to time) consistent with subsection (s)(2)(E).
‘‘(ii) LIMITATION.—For purposes of clause (i), an issuer of a medicare supplemental policy may request only the minimum amount of information necessary to accomplish the intended purpose.
‘‘(D) RESEARCH EXCEPTION.—Notwithstanding subparagraph (A), an issuer of a medicare supplemental policy 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:
‘‘(i) 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.
‘‘(ii) 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.
‘‘(iii) No genetic information collected or acquired under this subparagraph shall be used for underwriting, determination of eligibility to enroll or maintain enrollment status, premium rating, or the creation, renewal, or replacement of a plan, contract, or coverage for health insurance or health benefits.
‘‘(iv) The issuer notifies the Secretary in writing that the issuer is conducting activities pursuant to the exception provided for under this subparagraph, including a description of the activities conducted.
‘‘(v) The issuer complies with such other conditions as the Secretary may by regulation require for activities conducted under this subparagraph.
‘‘(2) PROHIBITION ON COLLECTION OF GENETIC INFORMA- TION.—
‘‘(A) IN GENERAL.—An issuer of a medicare supplemental policy shall not request, require, or purchase genetic information for underwriting purposes (as defined in paragraph (3)).
‘‘(B) PROHIBITION ON COLLECTION OF GENETIC INFORMATION PRIOR TO ENROLLMENT.—
An issuer of a medicare supplemental policy shall not request, require, or purchase genetic information with respect to any individual prior to such individual’s enrollment under the policy in connection with such enrollment.
‘‘(C) INCIDENTAL COLLECTION.—
If an issuer of a medicare supplemental policy 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 subparagraph (B) if such request, requirement, or purchase is not in violation of subparagraph (A).
(2) APPLICATION TO GENETIC INFORMATION OF A FETUS OR EMBRYO.—
Section 1882(x) of such Act, as added by paragraph (1), is further amended by adding at the end the following:
‘‘(4) GENETIC INFORMATION OF A FETUS OR EMBRYO.—
Any reference in this section to genetic information concerning an individual or family member of an individual shall—
‘‘(A) 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
‘‘(B) 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.’’.
SEC. 105. PRIVACY AND CONFIDENTIALITY.
(a) IN GENERAL.—Part C of title XI of the Social Security Act is amended by adding at the end the following new section:
‘‘SEC. 1180. (a) IN GENERAL.—The Secretary shall revise the HIPAA privacy regulation (as defined in subsection (b)) so it is consistent with the following:
‘‘(1) Genetic information shall be treated as health information described in section 1171(4)(B).
‘‘(2) The use or disclosure by a covered entity that is a group health plan, health insurance issuer that issues health insurance coverage, or issuer of a medicare supplemental policy of protected health information that is genetic information about an individual for underwriting purposes under the group health plan, health insurance coverage, or medicare supplemental policy shall not be a permitted use or disclosure.
‘‘(b) DEFINITIONS.—
For purposes of this section:
‘‘(1) GENETIC INFORMATION; GENETIC TEST; FAMILY MEMBER.—
The terms ‘genetic information’, ‘genetic test’, and ‘family member’ have the meanings given such terms in section 2791 of the Public Health Service Act (42 U.S.C. 300gg–91), as amended by the Genetic Information Nondiscrimination Act of 2007.
‘‘(2) GROUP HEALTH PLAN; HEALTH INSURANCE COVERAGE; MEDICARE SUPPLEMENTAL POLICY.—
The terms ‘group health plan’ and ‘health insurance coverage’ have the meanings given such terms under section 2791 of the Public Health Service Act (42 U.S.C. 300gg–91), and the term ‘medicare supplemental policy’ has the meaning given such term in section 1882(g).
‘‘(3) HIPAA PRIVACY REGULATION.—
The term ‘HIPAA privacy regulation’ means the regulations promulgated by the Secretary under this part and section 264 of the Health Insurance Portability and Accountability Act of 1996 (42 U.S.C. 1320d–2 note).
‘‘(4) UNDERWRITING PURPOSES.—
The term ‘underwriting purposes’ means, with respect to a group health plan, health insurance coverage, or a medicare supplemental policy—
‘‘(A) rules for, or determination of, eligibility (including enrollment and continued eligibility) for, or determination of, benefits under the plan, coverage, or policy;
‘‘(B) the computation of premium or contribution amounts under the plan, coverage, or policy;
‘‘(C) the application of any pre-existing condition exclusion under the plan, coverage, or policy; and
‘‘(D) other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.
SEC. 202. EMPLOYER PRACTICES.
(a) DISCRIMINATION BASED ON GENETIC INFORMATION.—
It shall be an unlawful employment practice for an employer—
(1) to fail or refuse to hire, or to discharge, any employee, or otherwise to discriminate against any employee with respect to the compensation, terms, conditions, or privileges of employment of the employee, because of genetic information with respect to the employee; or
(2) to limit, segregate, or classify the employees of the employer in any way that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee as an employee, because of genetic information with respect to the employee.
(b) ACQUISITION OF GENETIC INFORMATION.—It shall be an unlawful employment practice for an employer to request, require, or purchase genetic information with respect to an employee or a family member of the employee except—
(1) where an employer inadvertently requests or requires family medical history of the employee or family member of the employee;
(2) where—
(A) health or genetic services are offered by the employer, including such services offered as part of a wellness program;
(B) the employee provides prior, knowing, voluntary, and written authorization;
(C) only the employee (or family member if the family member is receiving genetic services) and the licensed health care professional or board certified genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services; and
(D) any individually identifiable genetic information provided under subparagraph (C) in connection with the services provided under subparagraph (A) is only available for purposes of such services and shall not be disclosed to the employer except in aggregate terms that do not disclose the identity of specific employees;
(3) where an employer requests or requires family medical history from the employee to comply with the certification provisions of section 103 of the Family and Medical Leave Act of 1993 (29 U.S.C. 2613) or such requirements under State family and medical leave laws;
(4) where an employer purchases documents that are commercially and publicly available (including newspapers, magazines, periodicals, and books, but not including medical databases or court records) that include family medical history;
(5) where the information involved is to be used for genetic monitoring of the biological effects of toxic substances in the workplace, but only if—
(A) the employer provides written notice of the genetic monitoring to the employee;
(B)(i) the employee provides prior, knowing, voluntary, and written authorization; or
(ii) the genetic monitoring is required by Federal or State law;
(C) the employee is informed of individual monitoring results;
(D) the monitoring is in compliance with—
(i) any Federal genetic monitoring regulations, including any such regulations that may be promulgated by the Secretary of Labor pursuant to the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a State that is implementing genetic monitoring regulations under the authority of the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.); and
(E) the employer, excluding any licensed health care professional or board certified genetic counselor that is involved in the genetic monitoring program, receives the results of the monitoring only in aggregate terms that do not disclose the identity of specific employees; or
(6) where the employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or for purposes of human remains identification, and requests or requires genetic information of such employer’s employees, but only to the extent that such genetic information is used for analysis of DNA identification markers for quality control to detect sample contamination.
(c) PRESERVATION OF PROTECTIONS.—In the case of information to which any of paragraphs (1) through (6) of subsection (b) applies, such information may not be used in violation of paragraph (1) or (2) of subsection (a) or treated or disclosed in a manner that violates section 206.
SEC. 203. EMPLOYMENT AGENCY PRACTICES.
(a) DISCRIMINATION BASED ON GENETIC INFORMATION.—It shall be an unlawful employment practice for an employment agency—
(1) to fail or refuse to refer for employment, or otherwise to discriminate against, any individual because of genetic information with respect to the individual;
(2) to limit, segregate, or classify individuals or fail or refuse to refer for employment any individual in any way that would deprive or tend to deprive any individual of employment opportunities, or otherwise adversely affect the status of the individual as an employee, because of genetic information with respect to the individual; or
(3) to cause or attempt to cause an employer to discriminate against an individual in violation of this title.
(b) ACQUISITION OF GENETIC INFORMATION.—
It shall be an unlawful employment practice for an employment agency to request, require, or purchase genetic information with respect to an individual or a family member of the individual except—
(1) where an employment agency inadvertently requests or requires family medical history of the individual or family member of the individual;
(2) where—
(A) health or genetic services are offered by the employment agency, including such services offered as part of a wellness program;
(B) the individual provides prior, knowing, voluntary, and written authorization;
(C) only the individual (or family member if the family member is receiving genetic services) and the licensed health care professional or board certified genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services; and
(D) any individually identifiable genetic information provided under subparagraph (C) in connection with the services provided under subparagraph (A) is only available for purposes of such services and shall not be disclosed to the employment agency except in aggregate terms that do not disclose the identity of specific individuals;
(3) where an employment agency requests or requires family medical history from the individual to comply with the certification provisions of section 103 of the Family and Medical Leave Act of 1993 (29 U.S.C. 2613) or such requirements under State family and medical leave laws;
(4) where an employment agency purchases documents that are commercially and publicly available (including newspapers, magazines, periodicals, and books, but not including medical databases or court records) that include family medical history; or
(5) where the information involved is to be used for genetic monitoring of the biological effects of toxic substances in the workplace, but only if—
(A) the employment agency provides written notice of the genetic monitoring to the individual;
(B)(i) the individual provides prior, knowing, voluntary, and written authorization; or
(ii) the genetic monitoring is required by Federal or State law;
(C) the individual is informed of individual monitoring results;
(D) the monitoring is in compliance with—
(i) any Federal genetic monitoring regulations, including any such regulations that may be promulgated by the Secretary of Labor pursuant to the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a State that is implementing genetic monitoring regulations under the authority of the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.); and
(E) the employment agency, excluding any licensed health care professional or board certified genetic counselor that is involved in the genetic monitoring program, receives the results of the monitoring only in aggregate terms that do not disclose the identity of specific individuals.
(c) PRESERVATION OF PROTECTIONS.—In the case of information to which any of paragraphs (1) through (5) of subsection (b) applies, such information may not be used in violation of paragraph (1), (2), or (3) of subsection (a) or treated or disclosed in a manner that violates section 206.
SEC. 204. LABOR ORGANIZATION PRACTICES.
(a) DISCRIMINATION BASED ON GENETIC INFORMATION.—
It shall be an unlawful employment practice for a labor organization—
(1) to exclude or to expel from the membership of the organization, or otherwise to discriminate against, any member because of genetic information with respect to the member;
(2) to limit, segregate, or classify the members of the organization, or fail or refuse to refer for employment any member, in any way that would deprive or tend to deprive any member of employment opportunities, or otherwise adversely affect the status of the member as an employee, because of genetic information with respect to the member; or
(3) to cause or attempt to cause an employer to discriminate against a member in violation of this title.
(b) ACQUISITION OF GENETIC INFORMATION.—
It shall be an unlawful employment practice for a labor organization to request, require, or purchase genetic information with respect to a member or a family member of the member except—
(1) where a labor organization inadvertently requests or requires family medical history of the member or family member of the member;
(2) where—
(A) health or genetic services are offered by the labor organization, including such services offered as part of a wellness program;
(B) the member provides prior, knowing, voluntary, and written authorization;
(C) only the member (or family member if the family member is receiving genetic services) and the licensed health care professional or board certified genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services; and
(D) any individually identifiable genetic information provided under subparagraph (C) in connection with the services provided under subparagraph (A) is only available for purposes of such services and shall not be disclosed to the labor organization except in aggregate terms that do not disclose the identity of specific members;
(3) where a labor organization requests or requires family medical history from the members to comply with the certification provisions of section 103 of the Family and Medical Leave Act of 1993 (29 U.S.C. 2613) or such requirements under State family and medical leave laws;
(4) where a labor organization purchases documents that are commercially and publicly available (including newspapers, magazines, periodicals, and books, but not including medical databases or court records) that include family medical history; or
(5) where the information involved is to be used for genetic monitoring of the biological effects of toxic substances in the workplace, but only if—
(A) the labor organization provides written notice of the genetic monitoring to the member;
(B)(i) the member provides prior, knowing, voluntary, and written authorization; or
(ii) the genetic monitoring is required by Federal or State law;
(C) the member is informed of individual monitoring results;
(D) the monitoring is in compliance with—
(i) any Federal genetic monitoring regulations, including any such regulations that may be promulgated by the Secretary of Labor pursuant to the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a State that is implementing genetic monitoring regulations under the authority of the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.); and
(E) the labor organization, excluding any licensed health care professional or board certified genetic counselor that is involved in the genetic monitoring program, receives the results of the monitoring only in aggregate terms that do not disclose the identity of specific members.
(c) PRESERVATION OF PROTECTIONS.—In the case of information to which any of paragraphs (1) through (5) of subsection (b) applies, such information may not be used in violation of paragraph (1), (2), or (3) of subsection (a) or treated or disclosed in a manner that violates section 206.
SEC. 205. TRAINING PROGRAMS.
(a) DISCRIMINATION BASED ON GENETIC INFORMATION.—
It shall be an unlawful employment practice for any employer, labor organization, or joint labor-management committee controlling apprenticeship or other training or retraining, including on-thejob training programs—
(1) to discriminate against any individual because of genetic information with respect to the individual in admission to, or employment in, any program established to provide apprenticeship or other training or retraining;
(2) to limit, segregate, or classify the applicants for or participants in such apprenticeship or other training or retraining, or fail or refuse to refer for employment any individual, in any way that would deprive or tend to deprive any individual of employment opportunities, or otherwise adversely affect the status of the individual as an employee, because of genetic information with respect to the individual; or
(3) to cause or attempt to cause an employer to discriminate against an applicant for or a participant in such apprenticeship or other training or retraining in violation of this title.
(b) ACQUISITION OF GENETIC INFORMATION.—It shall be an unlawful employment practice for an employer, labor organization, or joint labor-management committee described in subsection (a) to request, require, or purchase genetic information with respect to an individual or a family member of the individual except—
(1) where the employer, labor organization, or joint labor-management committee inadvertently requests or requires family medical history of the individual or family member of the individual;
(2) where—
(A) health or genetic services are offered by the employer, labor organization, or joint labor-management committee, including such services offered as part of a wellness program;
(B) the individual provides prior, knowing, voluntary, and written authorization;
(C) only the individual (or family member if the family member is receiving genetic services) and the licensed health care professional or board certified genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services; and
(D) any individually identifiable genetic information provided under subparagraph (C) in connection with the services provided under subparagraph (A) is only available for purposes of such services and shall not be disclosed to the employer, labor organization, or joint labor-management committee except in aggregate terms that do not disclose the identity of specific individuals;
(3) where the employer, labor organization, or joint labormanagement committee requests or requires family medical history from the individual to comply with the certification provisions of section 103 of the Family and Medical Leave Act of 1993 (29 U.S.C. 2613) or such requirements under State family and medical leave laws;
(4) where the employer, labor organization, or joint labormanagement committee purchases documents that are commercially and publicly available (including newspapers, magazines, periodicals, and books, but not including medical databases or court records) that include family medical history;
(5) where the information involved is to be used for genetic monitoring of the biological effects of toxic substances in the workplace, but only if—
(A) the employer, labor organization, or joint labormanagement committee provides written notice of the genetic monitoring to the individual;
(B)(i) the individual provides prior, knowing, voluntary, and written authorization; or
(ii) the genetic monitoring is required by Federal or State law;
(C) the individual is informed of individual monitoring results;
(D) the monitoring is in compliance with—
(i) any Federal genetic monitoring regulations, including any such regulations that may be promulgated by the Secretary of Labor pursuant to the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a State that is implementing genetic monitoring regulations under the authority of the Occupational Safety and Health Act of 1970 (29 U.S.C. 651 et seq.); and
(E) the employer, labor organization, or joint labormanagement committee, excluding any licensed health care professional or board certified genetic counselor that is involved in the genetic monitoring program, receives the results of the monitoring only in aggregate terms that do not disclose the identity of specific individuals; or
(6) where the employer conducts DNA analysis for law enforcement purposes as a forensic laboratory or for purposes of human remains identification, and requests or requires genetic information of such employer’s apprentices or trainees, but only to the extent that such genetic information is used for analysis of DNA identification markers for quality control to detect sample contamination.
(c) PRESERVATION OF PROTECTIONS.—In the case of information to which any of paragraphs (1) through (6) of subsection (b) applies, such information may not be used in violation of paragraph (1), (2), or (3) of subsection (a) or treated or disclosed in a manner that violates section 206.
SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.
(a) TREATMENT OF INFORMATION AS PART OF CONFIDENTIAL MEDICAL RECORD.—
If an employer, employment agency, labor organization, or joint labor-management committee possesses genetic information about an employee or member, such information shall be maintained on separate forms and in separate medical files and be treated as a confidential medical record of the employee or member. An employer, employment agency, labor organization, or joint labor-management committee shall be considered to be in compliance with the maintenance of information requirements of this subsection with respect to genetic information subject to this subsection that is maintained with and treated as a confidential medical record under section 102(d)(3)(B) of the Americans With Disabilities Act (42 U.S.C. 12112(d)(3)(B)).
(b) LIMITATION ON DISCLOSURE.—
An employer, employment agency, labor organization, or joint labor-management committee shall not disclose genetic information concerning an employee or member except—
(1) to the employee or member of a labor organization (or family member if the family member is receiving the genetic services) at the written request of the employee or member of such organization;
(2) to an occupational or other health researcher if the research is conducted in compliance with the regulations and protections provided for under part 46 of title 45, Code of Federal Regulations;
(3) in response to an order of a court, except that—
(A) the employer, employment agency, labor organization, or joint labor-management committee may disclose only the genetic information expressly authorized by such order; and
(B) if the court order was secured without the knowledge of the employee or member to whom the information refers, the employer, employment agency, labor organization, or joint labor-management committee shall inform the employee or member of the court order and any genetic information that was disclosed pursuant to such order;
(4) to government officials who are investigating compliance with this title if the information is relevant to the investigation;
(5) to the extent that such disclosure is made in connection with the employee’s compliance with the certification provisions of section 103 of the Family and Medical Leave Act of 1993 (29 U.S.C. 2613) or such requirements under State family and medical leave laws; or
(6) to a Federal, State, or local public health agency only with regard to information that is described in section 201(4)(A)(iii) and that concerns a contagious disease that presents an imminent hazard of death or life-threatening illness, and that the employee whose family member or family members is or are the subject of a disclosure under this paragraph is notified of such disclosure.
(c) RELATIONSHIP TO HIPAA REGULATIONS.—
With respect to 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 (42 U.S.C. 1320d–2 note), this title does not prohibit a covered entity under such regulations from any use or disclosure of health information that is authorized for the covered entity under such regulations. The previous sentence does not affect the authority of such Secretary to modify such regulations.
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