[House Report 110-28]
[From the U.S. Government Publishing Office]
110th Congress Rept. 110-28
HOUSE OF REPRESENTATIVES
1st Session Part 2
======================================================================
GENETIC INFORMATION NONDISCRIMINATION ACT OF 2007
_______
March 26, 2007.--Ordered to be printed
_______
Mr. Rangel, from the Committee on Ways and Means, submitted the
following
R E P O R T
together with
ADDITIONAL VIEWS
[To accompany H.R. 493]
[Including cost estimate of the Congressional Budget Office]
The Committee on Ways and Means, to whom was referred the
bill (H.R. 493) to prohibit discrimination on the basis of
genetic information with respect to health insurance and
employment, having considered the same, report favorably
thereon with an amendment and recommend that the bill as
amended do pass.
The amendment is as follows:
Strike all after the enacting clause and insert the
following:
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) Short Title.--This Act may be cited as the ``Genetic Information
Nondiscrimination Act of 2007''.
(b) Table of Contents.--The table of contents of this Act is as
follows:
Sec. 1. Short title; table of contents.
Sec. 2. Findings.
TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
Sec. 101. Amendments to Employee Retirement Income Security Act of
1974.
Sec. 102. Amendments to the Public Health Service Act.
Sec. 103. Amendments to the Internal Revenue Code of 1986.
Sec. 104. Amendments to title XVIII of the Social Security Act relating
to Medigap.
Sec. 105. Privacy and confidentiality.
Sec. 106. Assuring coordination.
Sec. 107. Regulations; effective date.
TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC
INFORMATION
Sec. 201. Definitions.
Sec. 202. Employer practices.
Sec. 203. Employment agency practices.
Sec. 204. Labor organization practices.
Sec. 205. Training programs.
Sec. 206. Confidentiality of genetic information.
Sec. 207. Remedies and enforcement.
Sec. 208. Disparate impact.
Sec. 209. Construction.
Sec. 210. Medical information that is not genetic information.
Sec. 211. Regulations.
Sec. 212. Authorization of appropriations.
Sec. 213. Effective date.
TITLE III--MISCELLANEOUS PROVISION
Sec. 301. Severability.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Deciphering the sequence of the human genome and other
advances in genetics open major new opportunities for medical
progress. New knowledge about the genetic basis of illness will
allow for earlier detection of illnesses, often before symptoms
have begun. Genetic testing can allow individuals to take steps
to reduce the likelihood that they will contract a particular
disorder. New knowledge about genetics may allow for the
development of better therapies that are more effective against
disease or have fewer side effects than current treatments.
These advances give rise to the potential misuse of genetic
information to discriminate in health insurance and employment.
(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.
TITLE I--GENETIC NONDISCRIMINATION IN HEALTH INSURANCE
SEC. 101. AMENDMENTS TO EMPLOYEE RETIREMENT INCOME SECURITY ACT OF
1974.
(a) Prohibition of Health Discrimination on the Basis of Genetic
Information or Genetic Services.--
(1) No enrollment restriction for genetic services.--Section
702(a)(1)(F) of the Employee Retirement Income Security Act of
1974 (29 U.S.C. 1182(a)(1)(F)) is amended by inserting before
the period the following: ``(including information about a
request for or receipt of genetic services by an individual or
family member of such individual)''.
(2) No discrimination in group premiums based on genetic
information.--Section 702(b) of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1182(b)) is amended--
(A) in paragraph (2)(A), by inserting before the
semicolon the following: ``except as provided in
paragraph (3)''; and
(B) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan, or a health insurance issuer offering group health
insurance coverage in connection with a group health plan,
shall not adjust premium or contribution amounts for a group on
the basis of genetic information concerning an individual in
the group or a family member of the individual (including
information about a request for or receipt of genetic services
by an individual or family member of such individual).''.
(b) Limitations on Genetic Testing.--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, or 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.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care
professional who is providing health care services with
respect to an individual to request that such
individual or a family member of such individual
undergo a genetic test;
``(B) limit the authority of a health care
professional who is employed by or affiliated with a
group health plan or a health insurance issuer and who
is providing health care services to an individual as
part of a bona fide wellness program to notify such
individual of the availability of a genetic test or to
provide information to such individual regarding such
genetic test; or
``(C) authorize or permit a health care professional
to require that an individual undergo a genetic test.
``(d) Application to All Plans.--The provisions of subsections
(a)(1)(F), (b)(3), and (c) shall apply to group health plans and health
insurance issuers without regard to section 732(a).''.
(c) Remedies and Enforcement.--Section 502 of the Employee Retirement
Income Security Act of 1974 (29 U.S.C. 1132) is amended by adding at
the end the following:
``(n) Enforcement of Genetic Nondiscrimination Requirements.--
``(1) Injunctive relief for irreparable harm.--With respect
to any violation of subsection (a)(1)(F), (b)(3), or (c) of
section 702, a participant or beneficiary may seek relief under
subsection 502(a)(1)(B) prior to the exhaustion of available
administrative remedies under section 503 if it is demonstrated
to the court, by a preponderance of the evidence, that the
exhaustion of such remedies would cause irreparable harm to the
health of the participant or beneficiary. Any determinations
that already have been made under section 503 in such case, or
that are made in such case while an action under this paragraph
is pending, shall be given due consideration by the court in
any action under this subsection in such case.
``(2) Equitable relief for genetic nondiscrimination.--
``(A) Reinstatement of benefits where equitable
relief has been awarded.--The recovery of benefits by a
participant or beneficiary under a civil action under
this section may include an administrative penalty
under subparagraph (B) and the retroactive
reinstatement of coverage under the plan involved to
the date on which the participant or beneficiary was
denied eligibility for coverage if--
``(i) the civil action was commenced under
subsection (a)(1)(B); and
``(ii) the denial of coverage on which such
civil action was based constitutes a violation
of subsection (a)(1)(F), (b)(3), or (c) of
section 702.
``(B) Administrative penalty.--
``(i) In general.--An administrator who fails
to comply with the requirements of subsection
(a)(1)(F), (b)(3), or (c) of section 702 with
respect to a participant or beneficiary may, in
an action commenced under subsection (a)(1)(B),
be personally liable in the discretion of the
court, for a penalty in the amount not more
than $100 for each day in the noncompliance
period.
``(ii) Noncompliance period.--For purposes of
clause (i), the term `noncompliance period'
means the period--
``(I) beginning on the date that a
failure described in clause (i) occurs;
and
``(II) ending on the date that such
failure is corrected.
``(iii) Payment to participant or
beneficiary.--A penalty collected under this
subparagraph shall be paid to the participant
or beneficiary involved.
``(3) Secretarial enforcement authority.--
``(A) General rule.--The Secretary has the authority
to impose a penalty on any failure of a group health
plan to meet the requirements of subsection (a)(1)(F),
(b)(3), or (c) of section 702.
``(B) Amount.--
``(i) In general.--The amount of the penalty
imposed by subparagraph (A) shall be $100 for
each day in the noncompliance period with
respect to each individual to whom such failure
relates.
``(ii) Noncompliance period.--For purposes of
this paragraph, the term `noncompliance period'
means, with respect to any failure, the
period--
``(I) beginning on the date such
failure first occurs; and
``(II) ending on the date such
failure is corrected.
``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph
(D):
``(i) In general.--In the case of 1 or more
failures with respect to an individual--
``(I) which are not corrected before
the date on which the plan receives a
notice from the Secretary of such
violation; and
``(II) which occurred or continued
during the period involved;
the amount of penalty imposed by subparagraph
(A) by reason of such failures with respect to
such individual shall not be less than $2,500.
``(ii) Higher minimum penalty where
violations are more than de minimis.--To the
extent violations for which any person is
liable under this paragraph for any year are
more than de minimis, clause (i) shall be
applied by substituting `$15,000' for `$2,500'
with respect to such person.
``(D) Limitations.--
``(i) Penalty not to apply where failure not
discovered exercising reasonable diligence.--No
penalty shall be imposed by subparagraph (A) on
any failure during any period for which it is
established to the satisfaction of the
Secretary that the person otherwise liable for
such penalty did not know, and exercising
reasonable diligence would not have known, that
such failure existed.
``(ii) Penalty not to apply to failures
corrected within certain periods.--No penalty
shall be imposed by subparagraph (A) on any
failure if--
``(I) such failure was due to
reasonable cause and not to willful
neglect; and
``(II) such failure is corrected
during the 30-day period beginning on
the first date the person otherwise
liable for such penalty knew, or
exercising reasonable diligence would
have known, that such failure existed.
``(iii) Overall limitation for unintentional
failures.--In the case of failures which are
due to reasonable cause and not to willful
neglect, the penalty imposed by subparagraph
(A) for failures shall not exceed the amount
equal to the lesser of--
``(I) 10 percent of the aggregate
amount paid or incurred by the employer
(or predecessor employer) during the
preceding taxable year for group health
plans; or
``(II) $500,000.
``(E) Waiver by secretary.--In the case of a failure
which is due to reasonable cause and not to willful
neglect, the Secretary may waive part or all of the
penalty imposed by subparagraph (A) to the extent that
the payment of such penalty would be excessive relative
to the failure involved.''.
(d) Definitions.--Section 733(d) of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1191b(d)) is amended by adding at the
end the following:
``(5) Family member.--The term `family member' means with
respect to an individual--
``(A) the spouse of the individual;
``(B) a dependent child of the individual, including
a child who is born to or placed for adoption with the
individual; and
``(C) all other individuals related by blood to the
individual or the spouse or child described in
subparagraph (A) or (B).
``(6) Genetic information.--
``(A) In general.--Except as provided in subparagraph
(B), the term `genetic information' means information
about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of
the individual; or
``(iii) the occurrence of a disease or
disorder in family members of the individual.
``(B) Exclusions.--The term `genetic information'
shall not include information about the sex or age of
an individual.
``(7) 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.
``(8) Genetic services.--The term `genetic services' means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining,
interpreting, or assessing genetic information); or
``(C) genetic education.''.
(e) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor shall issue
final regulations in an accessible format 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 18 months after the date of
enactment of this title.
SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.
(a) Amendments Relating to the Group Market.--
(1) Prohibition of health discrimination on the basis of
genetic information or genetic services.--
(A) No enrollment restriction for genetic services.--
Section 2702(a)(1)(F) of the Public Health Service Act
(42 U.S.C. 300gg-1(a)(1)(F)) is amended by inserting
before the period the following: ``(including
information about a request for or receipt of genetic
services by an individual or family member of such
individual)''.
(B) No discrimination in group premiums based on
genetic information.--Section 2702(b) of the Public
Health Service Act (42 U.S.C. 300gg-1(b)) is amended--
(i) in paragraph (2)(A), by inserting before
the semicolon the following: ``, except as
provided in paragraph (3)''; and
(ii) by adding at the end the following:
``(3) No discrimination in group premiums based on genetic
information.--For purposes of this section, a group health
plan, or a health insurance issuer offering group health
insurance coverage in connection with a group health plan,
shall not adjust premium or contribution amounts for a group on
the basis of genetic information concerning an individual in
the group or a family member of the individual (including
information about a request for or receipt of genetic services
by an individual or family member of such individual).''.
(2) Limitations on genetic testing.--Section 2702 of the
Public Health Service Act (42 U.S.C. 300gg-1) is amended by
adding at the end the following:
``(c) Genetic Testing.--
``(1) Limitation on requesting or requiring genetic
testing.--A group health plan, or 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.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care
professional who is providing health care services with
respect to an individual to request that such
individual or a family member of such individual
undergo a genetic test;
``(B) limit the authority of a health care
professional who is employed by or affiliated with a
group health plan or a health insurance issuer and who
is providing health care services to an individual as
part of a bona fide wellness program to notify such
individual of the availability of a genetic test or to
provide information to such individual regarding such
genetic test; or
``(C) authorize or permit a health care professional
to require that an individual undergo a genetic test.
``(d) Application to All Plans.--The provisions of subsections
(a)(1)(F), (b)(3), and (c) shall apply to group health plans and health
insurance issuers without regard to section 2721(a).''.
(3) Remedies and enforcement.--Section 2722(b) of the Public
Health Service Act (42 U.S.C. 300gg-22(b)) is amended by adding
at the end the following:
``(3) Enforcement authority relating to genetic
discrimination.--
``(A) General rule.--In the cases described in
paragraph (1), notwithstanding the provisions of
paragraph (2)(C), the following provisions shall apply
with respect to an action under this subsection by the
Secretary with respect to any failure of a health
insurance issuer in connection with a group health
plan, to meet the requirements of subsection (a)(1)(F),
(b)(3), or (c) of section 2702.
``(B) Amount.--
``(i) In general.--The amount of the penalty
imposed under this paragraph shall be $100 for
each day in the noncompliance period with
respect to each individual to whom such failure
relates.
``(ii) Noncompliance period.--For purposes of
this paragraph, the term `noncompliance period'
means, with respect to any failure, the
period--
``(I) beginning on the date such
failure first occurs; and
``(II) ending on the date such
failure is corrected.
``(C) Minimum penalties where failure discovered.--
Notwithstanding clauses (i) and (ii) of subparagraph
(D):
``(i) In general.--In the case of 1 or more
failures with respect to an individual--
``(I) which are not corrected before
the date on which the plan receives a
notice from the Secretary of such
violation; and
``(II) which occurred or continued
during the period involved;
the amount of penalty imposed by subparagraph
(A) by reason of such failures with respect to
such individual shall not be less than $2,500.
``(ii) Higher minimum penalty where
violations are more than de minimis.--To the
extent violations for which any person is
liable under this paragraph for any year are
more than de minimis, clause (i) shall be
applied by substituting `$15,000' for `$2,500'
with respect to such person.
``(D) Limitations.--
``(i) Penalty not to apply where failure not
discovered exercising reasonable diligence.--No
penalty shall be imposed by subparagraph (A) on
any failure during any period for which it is
established to the satisfaction of the
Secretary that the person otherwise liable for
such penalty did not know, and exercising
reasonable diligence would not have known, that
such failure existed.
``(ii) Penalty not to apply to failures
corrected within certain periods.--No penalty
shall be imposed by subparagraph (A) on any
failure if--
``(I) such failure was due to
reasonable cause and not to willful
neglect; and
``(II) such failure is corrected
during the 30-day period beginning on
the first date the person otherwise
liable for such penalty knew, or
exercising reasonable diligence would
have known, that such failure existed.
``(iii) Overall limitation for unintentional
failures.--In the case of failures which are
due to reasonable cause and not to willful
neglect, the penalty imposed by subparagraph
(A) for failures shall not exceed the amount
equal to the lesser of--
``(I) 10 percent of the aggregate
amount paid or incurred by the employer
(or predecessor employer) during the
preceding taxable year for group health
plans; or
``(II) $500,000.
``(E) Waiver by secretary.--In the case of a failure
which is due to reasonable cause and not to willful
neglect, the Secretary may waive part or all of the
penalty imposed by subparagraph (A) to the extent that
the payment of such penalty would be excessive relative
to the failure involved.''.
(4) Definitions.--Section 2791(d) of the Public Health
Service Act (42 U.S.C. 300gg-91(d)) is amended by adding at the
end the following:
``(15) Family member.--The term `family member' means with
respect to an individual--
``(A) the spouse of the individual;
``(B) a dependent child of the individual, including
a child who is born to or placed for adoption with the
individual; and
``(C) all other individuals related by blood to the
individual or the spouse or child described in
subparagraph (A) or (B).
``(16) Genetic information.--
``(A) In general.--Except as provided in subparagraph
(B), the term `genetic information' means information
about--
``(i) an individual's genetic tests;
``(ii) the genetic tests of family members of
the individual; or
``(iii) the occurrence of a disease or
disorder in family members of the individual.
``(B) Exclusions.--The term `genetic information'
shall not include information about the sex or age of
an individual.
``(17) 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.
``(18) Genetic services.--The term `genetic services' means--
``(A) a genetic test;
``(B) genetic counseling (such as obtaining,
interpreting, or assessing genetic information); or
``(C) genetic education.''.
(b) Amendment Relating to the Individual Market.--
(1) In general.--The first subpart 3 of part B of title XXVII
of the Public Health Service Act (42 U.S.C. 300gg-51 et seq.)
(relating to other requirements) is amended--
(A) by redesignating such subpart as subpart 2; and
(B) by adding at the end the following:
``SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE BASIS OF
GENETIC INFORMATION.
``(a) Prohibition on Genetic Information as a Condition of
Eligibility.--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 (including information about a request for or receipt of
genetic services by an individual or family member of such individual).
``(b) Prohibition on Genetic Information in Setting Premium Rates.--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 (including information
about a request for or receipt of genetic services by an individual or
family member of such individual).
``(c) 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.--Nothing in this part shall be
construed to--
``(A) limit the authority of a health care
professional who is providing health care services with
respect to an individual to request that such
individual or a family member of such individual
undergo a genetic test;
``(B) limit the authority of a health care
professional who is employed by or affiliated with a
health insurance issuer and who is providing health
care services to an individual as part of a bona fide
wellness program to notify such individual of the
availability of a genetic test or to provide
information to such individual regarding such genetic
test; or
``(C) authorize or permit a health care professional
to require that an individual undergo a genetic
test.''.
(2) Remedies and enforcement.--Section 2761(b) of the Public
Health Service Act (42 U.S.C. 300gg-61(b)) is amended to read
as follows:
``(b) Secretarial Enforcement Authority.--The Secretary shall have
the same authority in relation to enforcement of the provisions of this
part with respect to issuers of health insurance coverage in the
individual market in a State as the Secretary has under section
2722(b)(2), and section 2722(b)(3) with respect to violations of
genetic nondiscrimination provisions, in relation to the enforcement of
the provisions of part A with respect to issuers of health insurance
coverage in the small group market in the State.''.
(c) Elimination of Option of Non-Federal Governmental Plans To Be
Excepted From Requirements Concerning Genetic Information.--Section
2721(b)(2) of the Public Health Service Act (42 U.S.C. 300gg-21(b)(2))
is amended--
(1) in subparagraph (A), by striking ``If the plan sponsor''
and inserting ``Except as provided in subparagraph (D), if the
plan sponsor''; and
(2) by adding at the end the following:
``(D) Election not applicable to requirements
concerning genetic information.--The election described
in subparagraph (A) shall not be available with respect
to the provisions of subsections (a)(1)(F) and (c) of
section 2702 and the provisions of section 2702(b) to
the extent that such provisions apply to genetic
information (or information about a request for or the
receipt of genetic services by an individual or a
family member of such individual).''.
(d) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this title, the Secretary of Labor and the
Secretary of Health and Human Services (as the case may be)
shall issue final regulations in an accessible format to carry
out the amendments made by this section.
(2) Effective date.--The amendments made by this section
shall apply--
(A) with respect to group health plans, and health
insurance coverage offered in connection with group
health plans, for plan years beginning after the date
that is 18 months after the date of enactment of this
title; and
(B) with respect to health insurance coverage
offered, sold, issued, renewed, in effect, or operated
in the individual market after the date that is 18
months after the date of enactment of this title.
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.--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) Limitations on Genetic Testing and Collection of Genetic
Information.--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) Exception for health care professionals.--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) Provision of information not prohibited.--Paragraph (1)
shall not be construed to limit the authority of a group health
plan--
``(A) to provide information generally about the
availability of genetic tests, or
``(B) to provide information about genetic tests to a
health care professional with respect to the treatment
of an individual to whom such professional is providing
health care services.
``(d) Prohibition on Collection of Genetic Information.--
``(1) In general.--A group health plan shall not request,
require, or purchase genetic information for purposes of
underwriting (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) shall apply to group health plans
without regard to section 9831(a).''.
(c) 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 occurrence 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 genetic services,
receipt of genetic services, or participation in any
clinical research, or any other program, 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.
``(D) Application to family members covered under
same plan.--Information described in clause (iii) of
subparagraph (A) shall not be treated as genetic
information to the extent that such information is
taken into account only with respect to the individual
in which such disease or disorder occurs and not as
genetic information with respect to any other
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.
``(9) Genetic services.--The term `genetic services' means--
``(A) a genetic test,
``(B) genetic counseling (such as obtaining,
interpreting, or assessing genetic information), and
``(C) genetic education.
``(10) Underwriting.--The term `underwriting' means, with
respect to any group health plan--
``(A) rules for eligibility (including enrollment and
continued eligibility) for, or determination of,
benefits under the plan,
``(B) the computation of premium or contribution
amounts under the plan,
``(C) the application of any pre-existing condition
exclusion under the plan, and
``(D) other activities related to the creation,
renewal, or replacement of a contract of health
insurance or health benefits.''.
(d) Enforcement.--
(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:
``SEC. 9834. ENFORCEMENT.
``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:
``Sec. 9834. Enforcement.''.
(e) Regulations and Effective Date.--
(1) Regulations.--The Secretary of the Treasury shall issue
regulations or other guidance not later than 1 year 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 18 months after the date of
the enactment of this Act.
SEC. 104. AMENDMENTS TO TITLE XVIII OF THE SOCIAL SECURITY ACT RELATING
TO MEDIGAP.
(a) Nondiscrimination.--Section 1882(s)(2) of the Social Security Act
(42 U.S.C. 1395ss(s)(2)) is amended by adding at the end the following:
``(E) An issuer of a medicare supplemental policy shall not deny or
condition the issuance or effectiveness of the policy (including the
imposition of any exclusion of benefits under the policy based on a
pre-existing condition) and shall not discriminate in the pricing of
the policy (including the adjustment of premium rates) of an individual
on the basis of the genetic information with respect to such
individual.''.
(b) Limitations on Genetic Testing and Collection of 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 Collection of Genetic
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) Exception for health care professionals.--
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) Provision of information not prohibited.--
Subparagraph (A) shall not be construed to limit the
authority of an issuer of a medicare supplemental
policy--
``(i) to provide information generally about
the availability of genetic tests, or
``(ii) to provide information about genetic
tests to a health care professional with
respect to the treatment of an individual to
whom such professional is providing health care
services.
``(2) Prohibition on collection of genetic information.--
``(A) In general.--An issuer of a medicare
supplemental policy shall not request, require, or
purchase genetic information for purposes of
underwriting.
``(B) Limitation relating to the collection of
genetic information prior to enrollment.--An issuer of
a medicare supplemental policy shall not request,
require, or purchase genetic information concerning any
individual prior to such individual's enrollment under
the policy or in connection with such enrollment.
``(C) Incidental collection.--Where an issuer of a
medicare supplemental policy obtains genetic
information incidental to the requesting, requiring, or
purchasing of other information concerning an enrollee,
such request, requirement, or purchase shall not be
considered a violation of this paragraph if such
request, requirement, or purchase is not in violation
of subparagraph (A).
``(3) Definitions.--In this subsection and subsection
(s)(2)(E):
``(A) Family member.--The term `family member' means,
with respect to any individual, any individual who is a
first-degree, second-degree, third-degree, or fourth-
degree relative of such individual.
``(B) Genetic information.--
``(i) 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 occurrence of a disease
or disorder in family members of such
individual.
``(ii) Inclusion of genetic services and
participation in genetic research.--Such term
includes, with respect to any individual, any
request for genetic services, receipt of
genetic services, or participation in any
clinical research, or any other program, which
includes genetic services, by such individual
or any family member of such individual.
``(iii) Exclusions.--The term `genetic
information' shall not include information
about the sex or age of an individual.
``(C) Genetic test.--
``(i) In general.--The term `genetic test'
means an analysis of human DNA, RNA,
chromosomes, proteins, or metabolites, that
detects genotypes, mutations, or chromosomal
changes.
``(ii) 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.
``(D) Genetic services.--The term `genetic services'
means--
``(i) a genetic test;
``(ii) genetic counseling (such as obtaining,
interpreting, or assessing genetic
information); and
``(iii) genetic education.
``(E) Underwriting.--The term `underwriting' means,
with respect to a medicare supplemental policy--
``(i) rules for eligibility (including
enrollment and continued eligibility) for, or
determination of, benefits under the policy;
``(ii) the computation of premium or
contribution amounts under the policy;
``(iii) the application of any pre-existing
condition exclusion under the policy; and
``(iv) other activities related to the
creation, renewal, or replacement of a contract
of health insurance or health benefits.
``(F) Issuer of a medicare supplemental policy.--The
term `issuer of a medicare supplemental policy'
includes a third-party administrator or other person
acting for or on behalf of such issuer.''.
(2) Conforming amendment.--Section 1882(o) of such Act (42
U.S.C. 1395ss(o)) is amended by adding at the end the
following:
``(4) The issuer of the medicare supplemental policy (as
defined in subsection (x)) complies with subsection (s)(2)(E)
and subsection (x).''.
(c) Effective Date.--The amendments made by this section shall apply
with respect to an issuer of a medicare supplemental policy for policy
years beginning on or after the date that is 18 months after the date
of enactment of this Act.
(d) Transition Provisions.--
(1) In general.--If the Secretary of Health and Human
Services identifies a State as requiring a change to its
statutes or regulations to conform its regulatory program to
the changes made by this section, the State regulatory program
shall not be considered to be out of compliance with the
requirements of section 1882 of the Social Security Act due
solely to failure to make such change until the date specified
in paragraph (4).
(2) NAIC standards.--If, not later than June 30, 2008, the
National Association of Insurance Commissioners (in this
subsection referred to as the ``NAIC'') modifies its NAIC Model
Regulation relating to section 1882 of the Social Security Act
(referred to in such section as the 1991 NAIC Model Regulation,
as subsequently modified) to conform to the amendments made by
this section, such revised regulation incorporating the
modifications shall be considered to be the applicable NAIC
model regulation (including the revised NAIC model regulation
and the 1991 NAIC Model Regulation) for the purposes of such
section.
(3) Secretary standards.--If the NAIC does not make the
modifications described in paragraph (2) within the period
specified in such paragraph, the Secretary of Health and Human
Services shall, not later than October 1, 2008, make the
modifications described in such paragraph and such revised
regulation incorporating the modifications shall be considered
to be the appropriate regulation for the purposes of such
section.
(4) Date specified.--
(A) In general.--Subject to subparagraph (B), the
date specified in this paragraph for a State is the
earlier of--
(i) the date the State changes its statutes
or regulations to conform its regulatory
program to the changes made by this section, or
(ii) October 1, 2008.
(B) Additional legislative action required.--In the
case of a State which the Secretary identifies as--
(i) requiring State legislation (other than
legislation appropriating funds) to conform its
regulatory program to the changes made in this
section, but
(ii) having a legislature which is not
scheduled to meet in 2008 in a legislative
session in which such legislation may be
considered, the date specified in this
paragraph is the first day of the first
calendar quarter beginning after the close of
the first legislative session of the State
legislature that begins on or after July 1,
2008. For purposes of the previous sentence, in
the case of a State that has a 2-year
legislative session, each year of such session
shall be deemed to be a separate regular
session of the State legislature.
SEC. 105. PRIVACY AND CONFIDENTIALITY.
Part C of title XI of the Social Security Act is amended by adding at
the end the following new section:
``application of hipaa regulations to genetic information
``Sec. 1180. (a) In General.--The Secretary of Health and Human
Services 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 plan,
coverage, or 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 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.
``(c) Procedure.--The revisions under subsection (a) shall be made by
notice in the Federal Register published not later than 60 days after
the date of the enactment of this section and shall be effective upon
publication, without opportunity for any prior public comment, but may
be revised, consistent with this section, after opportunity for public
comment.''.
SEC. 106. ASSURING COORDINATION.
(a) In General.--Except as provided in subsection (b), the Secretary
of the Treasury, the Secretary of Health and Human Services, and the
Secretary of Labor shall ensure, through the execution of an
interagency memorandum of understanding among such Secretaries, that--
(1) regulations, rulings, and interpretations issued by such
Secretaries relating to the same matter over which two or more
such Secretaries have responsibility under this title (and the
amendments made by this title) are administered so as to have
the same effect at all times; and
(2) coordination of policies relating to enforcing the same
requirements through such Secretaries in order to have a
coordinated enforcement strategy that avoids duplication of
enforcement efforts and assigns priorities in enforcement.
(b) Authority of the Secretary.--The Secretary of Health and Human
Services has the sole authority to promulgate regulations to implement
the amendment made by section 104.
SEC. 107. REGULATIONS; EFFECTIVE DATE.
(a) Regulations.--Not later than 1 year after the date of enactment
of this title, the Secretary of Labor, the Secretary of Health and
Human Services, and the Secretary of the Treasury shall issue final
regulations in an accessible format to carry out this title.
(b) Effective Date.--Except as provided in section 103, the
amendments made by this title shall take effect on the date that is 18
months after the date of enactment of this Act.
TITLE II--PROHIBITING EMPLOYMENT DISCRIMINATION ON THE BASIS OF GENETIC
INFORMATION
SEC. 201. DEFINITIONS.
In this title:
(1) Commission.--The term ``Commission'' means the Equal
Employment Opportunity Commission as created by section 705 of
the Civil Rights Act of 1964 (42 U.S.C. 2000e-4).
(2) Employee; employer; employment agency; labor
organization; member.--
(A) In general.--The term ``employee'' means--
(i) an employee (including an applicant), as
defined in section 701(f) of the Civil Rights
Act of 1964 (42 U.S.C. 2000e(f));
(ii) a State employee (including an
applicant) described in section 304(a) of the
Government Employee Rights Act of 1991 (42
U.S.C. 2000e-16c(a));
(iii) a covered employee (including an
applicant), as defined in section 101 of the
Congressional Accountability Act of 1995 (2
U.S.C. 1301);
(iv) a covered employee (including an
applicant), as defined in section 411(c) of
title 3, United States Code; or
(v) an employee or applicant to which section
717(a) of the Civil Rights Act of 1964 (42
U.S.C. 2000e-16(a)) applies.
(B) Employer.--The term ``employer'' means--
(i) an employer (as defined in section 701(b)
of the Civil Rights Act of 1964 (42 U.S.C.
2000e(b));
(ii) an entity employing a State employee
described in section 304(a) of the Government
Employee Rights Act of 1991;
(iii) an employing office, as defined in
section 101 of the Congressional Accountability
Act of 1995;
(iv) an employing office, as defined in
section 411(c) of title 3, United States Code;
or
(v) an entity to which section 717(a) of the
Civil Rights Act of 1964 applies.
(C) Employment agency; labor organization.--The terms
``employment agency'' and ``labor organization'' have
the meanings given the terms in section 701 of the
Civil Rights Act of 1964 (42 U.S.C. 2000e).
(D) Member.--The term ``member'', with respect to a
labor organization, includes an applicant for
membership in a labor organization.
(3) Family member.--The term ``family member'' means with
respect to an individual--
(A) the spouse of the individual;
(B) a dependent child of the individual, including a
child who is born to or placed for adoption with the
individual; and
(C) all other individuals related by blood to the
individual or the spouse or child described in
subparagraph (A) or (B).
(4) Genetic information.--
(A) In general.--Except as provided in subparagraph
(B), the term ``genetic information'' means information
about--
(i) an individual's genetic tests;
(ii) the genetic tests of family members of
the individual; or
(iii) the occurrence of a disease or disorder
in family members of the individual.
(B) Exceptions.--The term ``genetic information''
shall not include information about the sex or age of
an individual.
(5) Genetic monitoring.--The term ``genetic monitoring''
means the periodic examination of employees to evaluate
acquired modifications to their genetic material, such as
chromosomal damage or evidence of increased occurrence of
mutations, that may have developed in the course of employment
due to exposure to toxic substances in the workplace, in order
to identify, evaluate, and respond to the effects of or control
adverse environmental exposures in the workplace.
(6) Genetic services.--The term ``genetic services'' means--
(A) a genetic test;
(B) genetic counseling (such as obtaining,
interpreting or assessing genetic information); or
(C) genetic education.
(7) Genetic test.--
(A) In general.--The term ``genetic test'' means the
analysis of human DNA, RNA, chromosomes, proteins, or
metabolites, that detects genotypes, mutations, or
chromosomal changes.
(B) Exception.--The term ``genetic test'' does not
mean an analysis of proteins or metabolites that does
not detect genotypes, mutations, or chromosomal
changes.
SEC. 202. EMPLOYER PRACTICES.
(a) Use of 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 information about a request for or
the receipt of genetic services by such employee or family
member of such 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 (or
information about a request for or the receipt of genetic
services by such employee or family member of such 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 (or information about a request for the receipt of genetic
services by such employee or a family member of such 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
bona fide 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; 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 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;
(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) or (2) of
subsection (a) or treated or disclosed in a manner that violates
section 206.
SEC. 203. EMPLOYMENT AGENCY PRACTICES.
(a) Use of 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 (or information
about a request for or the receipt of genetic services by such
individual or family member of such 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 information about a request for
or the receipt of genetic services by such individual or family
member of such 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 (or information about a request for the
receipt of genetic services by such individual or a family member of
such 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 bona fide 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) or (2) of
subsection (a) or treated or disclosed in a manner that violates
section 206.
SEC. 204. LABOR ORGANIZATION PRACTICES.
(a) Use of 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 (or
information about a request for or the receipt of genetic
services by such member or family member of such 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 information
about a request for or the receipt of genetic services by such
member or family member of such 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 (or information about a request for the receipt of
genetic services by such member or a family member of such 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 bona fide 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) or (2) of
subsection (a) or treated or disclosed in a manner that violates
section 206.
SEC. 205. TRAINING PROGRAMS.
(a) Use of 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-the-job training programs--
(1) to discriminate against any individual because of genetic
information with respect to the individual (or information
about a request for or the receipt of genetic services by such
individual or a family member of such 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 information about a request for or receipt of genetic
services by such individual or family member of such
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 (or information about a request
for the receipt of genetic services by such individual or a family
member of such 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
bona fide 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;
(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 labor-
management 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 labor-
management 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; 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 employer, labor organization, or joint labor-
management 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 labor-
management 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;
(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) or (2) 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 (or information about a request for or receipt of
genetic services by such employee or member or family member of such
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.
(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 (or information
about a request for or receipt of genetic services by such employee or
member or family member of such employee or member) except--
(1) to the employee (or family member if the family member is
receiving the genetic services) or member of a labor
organization at the 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 provide the employee or member with adequate
notice to challenge the court order;
(4) to government officials who are investigating compliance
with this title if the information is relevant to the
investigation; or
(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.
SEC. 207. REMEDIES AND ENFORCEMENT.
(a) Employees Covered by Title VII of the Civil Rights Act of 1964.--
(1) In general.--The powers, remedies, and procedures
provided in sections 705, 706, 707, 709, 710, and 711 of the
Civil Rights Act of 1964 (42 U.S.C. 2000e-4 et seq.) to the
Commission, the Attorney General, or any person, alleging a
violation of title VII of that Act (42 U.S.C. 2000e et seq.)
shall be the powers, remedies, and procedures this title
provides to the Commission, the Attorney General, or any
person, respectively, alleging an unlawful employment practice
in violation of this title against an employee described in
section 201(2)(A)(i), except as provided in paragraphs (2) and
(3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, or any person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, the Attorney General, or
any person, alleging such a practice (not an employment
practice specifically excluded from coverage under section
1977A(a)(1) of the Revised Statutes).
(b) Employees Covered by Government Employee Rights Act of 1991.--
(1) In general.--The powers, remedies, and procedures
provided in sections 302 and 304 of the Government Employee
Rights Act of 1991 (42 U.S.C. 2000e-16b, 2000e-16c) to the
Commission, or any person, alleging a violation of section
302(a)(1) of that Act (42 U.S.C. 2000e-16b(a)(1)) shall be the
powers, remedies, and procedures this title provides to the
Commission, or any person, respectively, alleging an unlawful
employment practice in violation of this title against an
employee described in section 201(2)(A)(ii), except as provided
in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, or any
person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, or any person, alleging
such a practice (not an employment practice specifically
excluded from coverage under section 1977A(a)(1) of the Revised
Statutes).
(c) Employees Covered by Congressional Accountability Act of 1995.--
(1) In general.--The powers, remedies, and procedures
provided in the Congressional Accountability Act of 1995 (2
U.S.C. 1301 et seq.) to the Board (as defined in section 101 of
that Act (2 U.S.C. 1301)), or any person, alleging a violation
of section 201(a)(1) of that Act (42 U.S.C. 1311(a)(1)) shall
be the powers, remedies, and procedures this title provides to
that Board, or any person, alleging an unlawful employment
practice in violation of this title against an employee
described in section 201(2)(A)(iii), except as provided in
paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to that Board, or any
person, alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to that Board, or any person, alleging such
a practice (not an employment practice specifically excluded
from coverage under section 1977A(a)(1) of the Revised
Statutes).
(4) Other applicable provisions.--With respect to a claim
alleging a practice described in paragraph (1), title III of
the Congressional Accountability Act of 1995 (2 U.S.C. 1381 et
seq.) shall apply in the same manner as such title applies with
respect to a claim alleging a violation of section 201(a)(1) of
such Act (2 U.S.C. 1311(a)(1)).
(d) Employees Covered by Chapter 5 of Title 3, United States Code.--
(1) In general.--The powers, remedies, and procedures
provided in chapter 5 of title 3, United States Code, to the
President, the Commission, the Merit Systems Protection Board,
or any person, alleging a violation of section 411(a)(1) of
that title, shall be the powers, remedies, and procedures this
title provides to the President, the Commission, such Board, or
any person, respectively, alleging an unlawful employment
practice in violation of this title against an employee
described in section 201(2)(A)(iv), except as provided in
paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the President, the
Commission, such Board, or any person, alleging such a
practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the President, the Commission, such
Board, or any person, alleging such a practice (not an
employment practice specifically excluded from coverage under
section 1977A(a)(1) of the Revised Statutes).
(e) Employees Covered by Section 717 of the Civil Rights Act of
1964.--
(1) In general.--The powers, remedies, and procedures
provided in section 717 of the Civil Rights Act of 1964 (42
U.S.C. 2000e-16) to the Commission, the Attorney General, the
Librarian of Congress, or any person, alleging a violation of
that section shall be the powers, remedies, and procedures this
title provides to the Commission, the Attorney General, the
Librarian of Congress, or any person, respectively, alleging an
unlawful employment practice in violation of this title against
an employee or applicant described in section 201(2)(A)(v),
except as provided in paragraphs (2) and (3).
(2) Costs and fees.--The powers, remedies, and procedures
provided in subsections (b) and (c) of section 722 of the
Revised Statutes (42 U.S.C. 1988), shall be powers, remedies,
and procedures this title provides to the Commission, the
Attorney General, the Librarian of Congress, or any person,
alleging such a practice.
(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes (42 U.S.C. 1981a),
including the limitations contained in subsection (b)(3) of
such section 1977A, shall be powers, remedies, and procedures
this title provides to the Commission, the Attorney General,
the Librarian of Congress, or any person, alleging such a
practice (not an employment practice specifically excluded from
coverage under section 1977A(a)(1) of the Revised Statutes).
(f) Definition.--In this section, the term ``Commission'' means the
Equal Employment Opportunity Commission.
SEC. 208. DISPARATE IMPACT.
(a) General Rule.--Notwithstanding any other provision of this Act,
``disparate impact'', as that term is used in section 703(k) of the
Civil Rights Act of 1964 (42 U.S.C. 2000e-2(k)), on the basis of
genetic information does not establish a cause of action under this
Act.
(b) Commission.--On the date that is 6 years after the date of
enactment of this Act, there shall be established a commission, to be
known as the Genetic Nondiscrimination Study Commission (referred to in
this section as the ``Commission'') to review the developing science of
genetics and to make recommendations to Congress regarding whether to
provide a disparate impact cause of action under this Act.
(c) Membership.--
(1) In general.--The Commission shall be composed of 8
members, of which--
(A) 1 member shall be appointed by the Majority
Leader of the Senate;
(B) 1 member shall be appointed by the Minority
Leader of the Senate;
(C) 1 member shall be appointed by the Chairman of
the Committee on Health, Education, Labor, and Pensions
of the Senate;
(D) 1 member shall be appointed by the ranking
minority member of the Committee on Health, Education,
Labor, and Pensions of the Senate;
(E) 1 member shall be appointed by the Speaker of the
House of Representatives;
(F) 1 member shall be appointed by the Minority
Leader of the House of Representatives;
(G) 1 member shall be appointed by the Chairman of
the Committee on Education and the Workforce of the
House of Representatives; and
(H) 1 member shall be appointed by the ranking
minority member of the Committee on Education and the
Workforce of the House of Representatives.
(2) Compensation and expenses.--The members of the Commission
shall not receive compensation for the performance of services
for the Commission, but shall be allowed travel expenses,
including per diem in lieu of subsistence, at rates authorized
for employees of agencies under subchapter I of chapter 57 of
title 5, United States Code, while away from their homes or
regular places of business in the performance of services for
the Commission.
(d) Administrative Provisions.--
(1) Location.--The Commission shall be located in a facility
maintained by the Equal Employment Opportunity Commission.
(2) Detail of government employees.--Any Federal Government
employee may be detailed to the Commission without
reimbursement, and such detail shall be without interruption or
loss of civil service status or privilege.
(3) Information from federal agencies.--The Commission may
secure directly from any Federal department or agency such
information as the Commission considers necessary to carry out
the provisions of this section. Upon request of the Commission,
the head of such department or agency shall furnish such
information to the Commission.
(4) Hearings.--The Commission may hold such hearings, sit and
act at such times and places, take such testimony, and receive
such evidence as the Commission considers advisable to carry
out the objectives of this section, except that, to the extent
possible, the Commission shall use existing data and research.
(5) Postal services.--The Commission may use the United
States mails in the same manner and under the same conditions
as other departments and agencies of the Federal Government.
(e) Report.--Not later than 1 year after all of the members are
appointed to the Commission under subsection (c)(1), the Commission
shall submit to Congress a report that summarizes the findings of the
Commission and makes such recommendations for legislation as are
consistent with this Act.
(f) Authorization of Appropriations.--There are authorized to be
appropriated to the Equal Employment Opportunity Commission such sums
as may be necessary to carry out this section.
SEC. 209. CONSTRUCTION.
Nothing in this title shall be construed to--
(1) limit the rights or 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) establish a violation under this title for an employer,
employment agency, labor organization, or joint labor-
management committee of a provision of the amendments made by
title I;
(3) 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;
(4) apply to the Armed Forces Repository of Specimen Samples
for the Identification of Remains;
(5) limit or expand the protections, rights, or obligations
of employees or employers under applicable workers'
compensation laws;
(6) 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); and
(7) 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.
SEC. 210. MEDICAL INFORMATION THAT IS NOT GENETIC INFORMATION.
An employer, employment agency, labor organization, or joint labor-
management committee shall not be considered to be in violation of this
title based on the use, acquisition, or disclosure of medical
information that is not genetic information about a manifested disease,
disorder, or pathological condition of an employee or member, including
a manifested disease, disorder, or pathological condition that has or
may have a genetic basis.
SEC. 211. REGULATIONS.
Not later than 1 year after the date of enactment of this title, the
Commission shall issue final regulations in an accessible format to
carry out this title.
SEC. 212. AUTHORIZATION OF APPROPRIATIONS.
There are authorized to be appropriated such sums as may be necessary
to carry out this title (except for section 208).
SEC. 213. EFFECTIVE DATE.
This title takes effect on the date that is 18 months after the date
of enactment of this Act.
TITLE III--MISCELLANEOUS PROVISION
SEC. 301. SEVERABILITY.
If any provision of this Act, an amendment made by this Act, or the
application of such provision or amendment to any person or
circumstance is held to be unconstitutional, the remainder of this Act,
the amendments made by this Act, and the application of such provisions
to any person or circumstance shall not be affected thereby.
I. SUMMARY AND BACKGROUND
A. Purpose and Summary
PURPOSE
The bill adopts national, uniform standards of protection
against discrimination in health insurance and employment based
on genetic information. Establishing these standards will allay
concerns about the potential for discrimination and encourage
individuals to participate in genetic research and to take
advantage of genetic testing and new therapies. The standards
will provide substantive protections to those individuals who
may suffer from actual genetic discrimination now and in the
future. The adoption of the standards is essential to
fulfilling the promise of the human genome project and
improving the health and longevity of the American people.
SUMMARY
The provisions of the bill, H.R. 493, as adopted by the
Committee, are as follows:
Section 103 prohibits a group health plan
from adjusting premiums or contribution amounts for the
group on the basis of genetic information and from
requesting or requiring genetic testing. Section 103
also restricts a group health plan's collection of
genetic information. The Committee bill enforces these
prohibitions through the use of an excise tax on group
health plans that fail to comply with these rules. This
same enforcement mechanism is used under present law
with respect to similar health care provisions,
including provisions relating to mental heath parity,
limitations on pre-existing condition exclusions, the
prohibition on discrimination based on health status,
and the rules relating to benefits for mothers and
newborns.
Section 104 prohibits an issuer of a
Medicare supplemental policy from denying or
conditioning the issuance of a policy, discriminating
in the price of the policy, or applying pre-existing
condition exclusions to the policy on the basis of
genetic information. Section 104 also prohibits an
issuer of a Medicare supplemental policy from
requesting or requiring genetic testing and restricts
an issuer's collection of genetic information.
Section 105 directs the Secretary of Health
and Human Services to conform our nation's privacy laws
governing health information to the provisions in this
bill.
Sections 106 and 107 require that the
Secretary of the Treasury, the Secretary of Health and
Human Services, and the Secretary of Labor coordinate
administration and enforcement and issue regulations
with respect to the standards protecting against
genetic discrimination.
B. Background and Need for Legislation
Advances in the science of genetics open major new
opportunities for medical progress, including earlier detection
of illnesses. These developments can provide individuals with
the opportunity to take steps to reduce the likelihood that
they will contract a particular disorder. These developments
also facilitate more advanced treatments. These advances will
also give rise to the potential for the misuse of genetic
information to discriminate in the areas of health insurance
and employment. Past experience with sterilization laws, as
well as examples of current genetic discrimination, have
created the need to protect against the misuse of genetic
information.
C. Legislative History
BACKGROUND
H.R. 493 was introduced in the House of Representatives on
January 16, 2007, and was referred to the Committee on
Education and Labor, the Committee on Energy and Commerce, and
the Committee on Ways and Means for a period to be determined
by the Speaker of the House, in each case for consideration of
such provisions as fall within the jurisdiction of the
Committee concerned. The bill, as amended, was favorably
reported by the Committee on Education and Labor on March 5,
2007, H. Rept. No. 110-28.
COMMITTEE HEARINGS
The Subcommittee on Health of the Committee on Ways and
Means conducted a hearing on the bill on March 14, 2007.
COMMITTEE ACTION
The Committee on Ways and Means marked up the bill on March
21, 2007, and ordered the bill, as amended, favorably reported.
II. EXPLANATION OF THE BILL
A. Prohibition of Discrimination Based on Genetic Testing (Secs. 103,
106, and 107 of the Bill and Sec. 9802 and New Sec. 9834 of the
Internal Revenue Code)
PRESENT LAW
The Health Insurance Portability and Accountability Act of
1996 (``HIPAA'') imposes a number of requirements with respect
to group health coverage that are designed to provide
protections to health plan participants. The requirements are
enforced through the Internal Revenue Code of 1986, as amended
(the ``Code''), the Employee Retirement Income Security Act of
1974 (``ERISA''), and the Public Health Service Act (``PHSA'').
Under present law, HIPAA provides certain protections
against genetic discrimination. Among other things, HIPAA
provides that a group health plan may not establish rules for
eligibility of any individual to enroll under the plan based on
genetic information.\1\ Under final regulations issued by the
Department of Treasury pursuant to HIPAA, any restriction on
benefits provided under a group health plan must apply
uniformly to all similarly situated individuals and must not be
directed at individual participants or beneficiaries based on
genetic information of the participants or beneficiaries.\2\ A
group health plan also may not require an individual to pay a
premium or contribution which is greater than such premium or
contribution for a similarly situated individual enrolled in
the plan on the basis of genetic information of the individual
or of a dependent enrolled under the plan.\3\
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\1\ Code sec. 9802(a).
\2\ Treas. Reg. sec. 54.9802-1(b)(2)(i)(B).
\3\ Code sec. 9802(b).
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In addition, HIPAA generally provides that a pre-existing
condition exclusion may be imposed with respect to a
participant or beneficiary only if: (1) the exclusion relates
to a condition (whether physical or mental), regardless of the
cause of the condition, for which medical advice, diagnosis,
care, or treatment was recommended or received within the 6-
month period ending on the enrollment date; (2) the exclusion
extends for a period of not more than 12 months after the
enrollment date; and (3) the period of any pre-existing
condition exclusion is reduced by the length of the aggregate
of the periods of creditable coverage (if any) applicable to
the participant as of the enrollment date. The limitation on
preexisting condition exclusions applies to exclusions on the
basis of genetic information.\4\
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\4\ Code sec. 9801.
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Under final regulations issued by the Department of
Treasury, genetic information is defined as information about
genes, gene products, and inherited characteristics that may
derive from the individual or a family member. This includes
information regarding carrier status and information derived
from laboratory tests that identify mutations in specific genes
or chromosomes, physical medical examinations, family
histories, and direct analysis of genes or chromosomes.\5\
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\5\ Treas. Reg. sec. 54.9801-2.
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The requirements do not apply to any governmental plan or
any group health plan that has less than two participants who
are current employees. A group health plan is defined as a plan
(including a self-insured plan) of, or contributed to by, an
employer (including a self-employed person) or employee
organization to provide health care (directly or otherwise) to
the employees, former employees, the employer, others
associated or formerly associated with the employer in a
business relationship, or their families.
The Code imposes an excise tax on group health plans which
fail to meet these requirements.\6\ The excise tax is equal to
$100 per day during the period of noncompliance and is
generally imposed on the employer sponsoring the plan if the
plan fails to meet the requirements. The maximum tax that can
be imposed during a taxable year cannot exceed the lesser of:
(1) 10 percent of the employer's group health plan expenses for
the prior year; or (2) $500,000. No tax is imposed if the
Secretary of the Treasury determines that the employer did not
know, and in exercising reasonable diligence would not have
known, that the failure existed.
---------------------------------------------------------------------------
\6\ Code sec. 4980D.
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REASONS FOR CHANGE
The advances in genetics open up many opportunities for
medical progress with respect to the prevention, detection, and
treatment of disease. However, this information also presents
the possibility for misuse. The Committee is aware of examples
of genetic discrimination in the workforce and with respect to
insurance. In some cases, 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 genetic information. The
Committee is concerned that the possibility of discrimination
on the basis of genetic information may prohibit individuals
from taking full advantage of the information that may be
available. Thus, some individuals may not be receiving the best
possible medical care. The Committee bill therefore adopts a
uniform, national standard that prohibits discrimination based
on genetic information. The Committee bill assures that the
full array of enforcement mechanisms applicable to group health
plans under the Code is available with respect to the
prohibition on genetic discrimination under this provision.
EXPLANATION OF PROVISION
The provision modifies the group health plan requirements
under the Code.
Under the provision, a group health plan may not adjust
premium or contribution amounts for the group covered under
such plan on the basis of genetic information. In the case of
family members who are covered under the same group health
plan, the group health plan is permitted to adjust premium or
contribution amounts for the group on the basis of the
occurrence of diseases or disorders in family members in the
group, provided that such information is taken into account
only with respect to the individual in which the disease or
disorder occurs and not as genetic information with respect to
family members in which the disease or disorder has not
occurred.
The provision also requires that a group health plan may
not request or require an individual or family member of such
individual to undergo a genetic test. The provision does not
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. The provision also does
not limit the authority of a group health plan to provide
information generally about the availability of genetic tests,
for example, in the case of a summary plan description, or to
provide information about genetic tests to a health care
professional with respect to the treatment of an individual to
whom such professional is providing health care services, for
example, during a quality assurance review.
The provision contains two rules with respect to a group
health plan's collection of genetic information. First, a group
health plan is prohibited from requesting, requiring, or
purchasing genetic information for purposes of underwriting.
Second, a group health plan is prohibited from requesting,
requiring, or purchasing genetic information with respect to
any individual prior to such individual's enrollment under the
plan or in connection with such enrollment. The second
prohibition is not violated where the collection of genetic
information is incidental to the requesting, requiring, or
purchasing of other information concerning the individual
provided that such request, requirement or purchase is not for
purposes of underwriting.
The term underwriting, with respect to any group health
plan, means: (1) rules for determining eligibility for, or
determination of, benefits under the plan; (2) the computation
of premium or contribution amounts under the plan; (3) the
application of any pre-existing condition exclusion under the
plan; and (4) other activities related to the creation,
renewal, or replacement of a contract of health insurance or
health benefits.
Under the provision, the current law requirement that a
group health plan may not establish rules for eligibility based
on genetic information is extended to governmental plans and
group health plans with less than two participants who are
current employees. The provisions requiring (1) that group
premiums or contribution amounts may not be adjusted on the
basis of genetic information of an individual in the group, (2)
that a group health plan may not request or require an
individual or family member of such individual undergo a
genetic test, and (3) that group health plans not collect
genetic information for purposes of underwriting or in
connection with enrollment also apply to all group health
plans.
Genetic information means, with respect to any individual,
information about: (1) such individual's genetic tests; (2) the
genetic tests of family members of such individual; and (3) the
occurrence of a disease or disorder in family members of such
individual. The term genetic information also includes, with
respect to any individual, any request for genetic services,
receipt of genetic services, or participation in any clinical
research, or any other program, which includes genetic
services, by such individual or any family member of such
individual. The term genetic information does not include the
occurrence of a disease or disorder in family members of an
individual to the extent that such information is taken into
account only with respect to the individual in which such
disease or disorder occurs and not as genetic information with
respect to any other individual.
A genetic test is defined as an analysis of human DNA, RNA,
chromosomes, proteins, or metabolites, that detects genotypes,
mutations, or chromosomal changes. The term genetic test does
not include (1) an analysis of proteins or metabolites that
does not detect genotypes, mutations, or chromosomal changes,
or (2) 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.
Genetic services are defined as a genetic test, genetic
counseling (such as obtaining, interpreting, or assessing
genetic information), and genetic education.
A family member means, with respect to an individual: (1)
the spouse of the individual; (2) a child of such individual
(by birth, adoption, or placement for adoption); and (3) 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 (1) or (2). In general, it is intended
that the term ``family member'' be interpreted broadly so as to
provide the maximum protection against discrimination.
Under the provision, the Secretary of the Treasury is
directed to issue regulations or other guidance to carry out
the provision no later than one year after date of enactment.
The Secretary of the Treasury is to coordinate administration
and enforcement with the Secretary of Health and Human Services
and the Secretary of Labor so that provisions over which two or
more such Secretaries have jurisdiction are administered in the
same manner and so as to avoid duplication of enforcement
efforts.
EFFECTIVE DATE
The provision is effective with respect to group health
plans for plan years beginning after the date that is 18 months
after the date of enactment.
B. Medigap Provisions (Sec. 104 of the Bill and Section 1882 of the
Social Security Act )
PRESENT LAW
Under the Medicare statute, all insurers offering Medigap
policies are required to offer open enrollment for six months
from the date on which the individual is 65 years of age or
older and is enrolled for benefits under Part B. During this
time an insurer cannot deny the issuance, or discriminate in
the pricing of a policy because of an individual's ``health
status, claims experience, receipt of health care, or medical
condition.'' However, the issuer may apply pre-existing
condition exclusions for the policy during its first 6 months,
based on a pre-existing condition for which the policy holder
had received treatment or was otherwise diagnosed during the 6
month period before the policy became effective. If an
individual applies for a Medigap policy after the open
enrollment period, the company is permitted to use medical
underwriting. This means that the company can use an
individual's medical history to decide whether or not to accept
the application and how much to charge for the policy.
The law also guarantees issuance of specified Medigap
policies (without an exclusion based on a pre-existing
condition) for certain persons whose previous supplementary
coverage was terminated. Again, the insurer cannot deny the
issuance, or discriminate in the pricing of a policy because of
an individual's ``health status, claims experience, receipt of
health care, or medical condition.'' This right must be
exercised within 63 days of termination of other enrollment.
The law states that no Medigap policy may be issued in a
state unless: (1) the state's regulatory program has been
approved by the Secretary as providing for the application and
enforcement of the National Association of Insurance
Commissioners' (NAIC's) Model Standards; or (2) (if the state's
program has not been approved), the policy has been approved by
the Secretary as meeting the standards. CMS published a Notice
in the Federal Register on March 25, 2005, which recognized the
latest version (with clarifications) adopted by the NAIC on
September 8, 2004.
EXPLANATION OF PROVISION
The bill would prohibit an issuer of a Medigap policy from:
(1) denying or conditioning the issuance or effectiveness of a
policy; (2) discriminating in the pricing of a policy; or (3)
applying pre-existing condition exclusions based on an
individual's genetic information (as defined in the bill). In
addition, the rules and definitions of section 103 of the bill
(relating to genetic nondiscrimination standards applicable to
group health plans) generally apply to the issuer of a Medigap
policy, except that the definition of the term family member
does not include the individual's spouse or dependent child
(except to the extent that the child is a first, second, third,
or fourth-degree relative of the individual).
A state identified by the Secretary as requiring a change
in its statutes or regulations to conform its regulatory
program to the requirements of this section would have until
October 1, 2008, to make such a change before being considered
out of compliance. States requiring a statutory change that do
not meet in legislative session in 2008 would be given
additional time to come into compliance. The bill would give
NAIC until June 30, 2008, to modify its model regulation to
conform to the requirements of this section. If NAIC failed to
meet that deadline, the Secretary would have until October 1,
2008, to make the modifications.
EFFECTIVE DATE
The provision is effective with respect to an issuer of a
Medigap policy for policy years beginning on or after the date
that is 18 months after the date of enactment.
C. Provisions Relating to Privacy and Confidentiality (Sec. 105 of the
Bill and New Section 1180 of the Social Security Act)
PRESENT LAW
Standards to protect the privacy of health information were
issued pursuant to HIPAA's Administrative Simplification
provisions. The HIPAA privacy rule (45 CFR Parts 160, 164)
applies to individually identifiable health (including genetic)
information that is created or received by individual and group
health plans (the term encompasses both private and government
plans, and HMOs) and health care providers. The rule, which
took effect in April 2003, gives patients the right of access
to their medical information and places certain limitations on
when and how plans and providers may use and disclose medical
information. Generally, plans and providers may use and
disclose health information for treatment, payment, and health
care operations (broadly defined) without the individual's
authorization and with few restrictions. Thus, the privacy rule
permits a health plan to use or disclose health (including
genetic) information for underwriting, premium rating, and
other activities related to the creation, renewal, or
replacement of a contract of health insurance or health
benefits.
EXPLANATION OF PROVISION
The bill would require the Secretary, by rulemaking, to
revise the HIPAA privacy rule as follows. First, genetic
information (as defined in the bill) would be treated as health
information under the privacy rule. This is already the case,
but it is not made explicit in the rule. Second, the use and
disclosure of genetic information by a group health plan,
health insurance issuer, or issuer of a Medigap policy for
underwriting and other activities related to the creation,
renewal, or replacement of a contract of health insurance or
health benefits would be prohibited.
EFFECTIVE DATE
The bill would require the Secretary to publish a revision
to the privacy rule in the Federal Register, not later than 60
days after enactment. The revision would take effect upon
publication, but may be further modified, after opportunity for
public comment.
III. VOTES OF THE COMMITTEE
In compliance with clause 3(b) of rule XIII of the Rules of
the House of Representatives, the following statement is made
concerning the votes of the Committee on Ways and Means in its
consideration of the bill, H.R. 493, the Genetic
Nondiscrimination Act of 2007.
The bill, HR. 493, as amended, was ordered favorably
reported by voice vote (with a quorum being present).
IV. BUDGET EFFECTS OF THE BILL
A. Committee Estimate of Budgetary Effects
In compliance with clause 3(d)(2) of rule XIII of the Rules
of the House of Representatives, the following statement is
made concerning the effects on the budget of the revenue
provisions of the bill, H.R. 493 as reported.
The effects of the bill on Federal budget receipts is
presented in the cost estimate provided by the Congressional
Budget Office (see below).
B. Statement Regarding New Budget Authority and Tax Expenditures Budget
Authority
In compliance with clause 3(c)(2) of rule XIII of the Rules
of the House of Representatives, the Committee states that the
bill involves no new or increased budget authority.
C. Cost Estimate Prepared by the Congressional Budget Office
In compliance with clause 3(c)(3) of rule XIII of the Rules
of the House of Representatives, requiring a cost estimate
prepared by the CBO, the following statement by CBO is
provided.
H.R. 493--Genetic Information Nondiscrimination Act of 2007
H.R. 493 would amend the Employee Retirement Income
Security Act of 1974 (ERISA), the Public Health Service Act,
Title XVIII of the Social Security Act, and the Internal
Revenue Code of 1986 to prohibit the use of genetic information
(including results of genetic tests and family history of
disease) by employers in employment decisions and by health
insurers and health plans in making enrollment determinations
and setting insurance premiums.
CBO estimates that enacting the bill would increase the
number of individuals who obtain health insurance by about 600
people per year, nearly all of whom would obtain insurance in
the individual market. The bill would affect federal revenues
because the premiums paid by some of those newly insured
individuals would be tax-deductible.
CBO estimates that enacting H.R. 493 would reduce revenues
by less than $500,000 in each year from 2008 through 2017, by
$1 million over the 2008-2012 period, and by $2 million over
the 2008-2017 period. (These estimates include reductions in
off-budget receipts from Social Security payroll taxes of less
than $500,000 over the 2008-2012 period, and slightly less than
$1 million over the 2008-2017 period.) The bill's requirements
would apply to Medicare supplemental insurance, which could
affect direct spending for Medicare. However, we estimate that
the bill would have no significant effect on direct spending.
The bill would require the Secretaries of Health and Human
Services (HHS), Labor, and the Treasury to issue regulations to
carry out the provisions of this bill, and would require the
Secretaries of HHS and Labor to enforce those provisions. In
addition, six years after enactment, the bill would establish a
commission to review the science of genetics and to make
recommendations to the Congress on the need to establish a
disparate impact standard for genetic discrimination. The bill
would authorize the appropriation of such sums as necessary to
establish the commission and to carry out the other provisions
of the bill. Assuming the availability of appropriated funds,
CBO estimates that implementing H.R. 493 would incur
discretionary costs of less than $500,000 in 2008 and $2
million over the 2008-2017 period.
Because H.R. 493 would limit state and local employment
practices and broaden an existing preemption of state law, it
contains intergovernmental mandates as defined in the Unfunded
Mandates Reform Act (UMRA). The bill would restrict how state
and local governments use genetic information in employment
practices and in the provision of health care to employees. It
also would broaden the scope of federal regulations that govern
the confidentiality of health information to include genetic
information, and in so doing, it would preempt state laws that
apply to such information. There is little indication that
state, local, or tribal governments currently engage in or are
likely to engage in the activities that would be prohibited by
the bill. Consequently, CBO estimates that the costs of the
mandates would not be significant and would not exceed the
threshold established in UMRA ($66 million in 2007, adjusted
annually for inflation).
The bill also contains private-sector mandates on health
insurers, health plans, employers, labor unions, and other
organizations by restricting how those entities use genetic
information in employment practices and in the provision of
health care to employees. CBO estimates that the direct cost of
those requirements would not exceed the annual threshold
specified in UMRA ($131 million in 2007, adjusted annually for
inflation) in any of the first five years the mandates would be
effective.
On March 2, 2007, CBO transmitted a cost estimate for H.R.
493, the Genetic Information Nondiscrimination Act of 2007, as
ordered reported by the House Committee on Education and Labor
on February 14, 2007. The Ways and Means Committee's version of
H.R. 493 differs from the previous version in that it would
also make conforming modifications to the Internal Revenue
Code. CBO and the Joint Committee on Taxation estimate those
conforming modifications would have no incremental budgetary
effect. Thus, CBO's estimates for the two versions of the
legislation are identical.
The CBO staff contacts for this estimate are Shinobu Suzuki
(for federal costs), Leo Lex (for the state and local impact),
and David Auerbach (for the private-sector impact). This
estimate was approved by Peter H. Fontaine, Deputy Assistant
Director for Budget Analysis.
D. Macroeconomic Impact Analysis
In compliance with clause 3(h)(2) of rule XIII of the Rules
of the House of Representatives, the following statement is
made by the Joint Committee on Taxation with respect to the
provisions of the bill amending the Internal Revenue Code of
1986: the effects of the bill on economic activity are so small
as to be incalculable within the context of a model of the
aggregate economy.
E. PAY-GO Rule
In compliance with clause 10 of rule XXI of the Rules of
the House of Representatives, the following statement is made
concerning the effects on the budget of the revenue provisions
of the bill, H.R. 493, as reported: the provisions of the bill
affecting revenues have the following net effect on the deficit
or surplus: (1) the bill would not increase the deficit or
reduce the surplus in fiscal year 2007; (2) the bill would
increase the deficit or reduce the surplus by $1 million over
the fiscal year 2008-2012 period; and (2) the bill would
increase the deficit or reduce the surplus by $2 million over
the fiscal year 2008-2017 period.
V. OTHER MATTERS TO BE DISCUSSED UNDER THE RULES OF THE HOUSE
A. Committee Oversight Findings and Recommendations
With respect to clause 3(c)(1) of rule XIII of the Rules of
the House of Representatives (relating to oversight findings),
the Committee advises that it is appropriate and timely to
enact the provisions included in the bill as reported.
B. Statement of General Performance Goals and Objectives
With respect to clause 3(c)(4) of rule XIII of the Rules of
the House of Representatives, the Committee advises that the
bill contains no measure that authorizes funding, so no
statement of general performance goals and objectives for which
any measure authorizes funding is required.
C. Constitutional Authority Statement
With respect to clause 3(d)(1) of rule XIII of the Rules of
the House of Representatives (relating to Constitutional
Authority), the Committee states that the Committee's action in
reporting this bill is derived from Article I of the
Constitution, Section 8 (``The Congress shall have Power To lay
and collect Taxes, Duties, Imposts and Excises . . .''), and
from the 16th Amendment to the Constitution.
D. Information Relating to Unfunded Mandates
This information is provided in accordance with section 423
of the Unfunded Mandates Act of 1995 (Pub. L. No. 104-4).
The Committee has determined that the revenue provisions of
the bill contain no Federal private sector mandates or Federal
intergovernmental mandates on State, local, or tribal
governments within the meaning of the Unfunded Mandates Act.
E. Applicability of House Rule XXI 5(b)
Clause 5 of rule XXI of the Rules of the House of
Representatives provides, in part, that ``A bill or joint
resolution, amendment, or conference report carrying a Federal
income tax rate increase may not be considered as passed or
agreed to unless so determined by a vote of not less than
three-fifths of the Members voting, a quorum being present.''
The Committee has carefully reviewed the provisions of the
bill, and states that the provisions of the bill do not involve
any Federal income tax rate increases within the meaning of the
rule.
F. Tax Complexity Analysis
Section 4022(b) of the Internal Revenue Service Reform and
Restructuring Act of 1998 (the ``IRS Reform Act'') requires the
Joint Committee on Taxation (in consultation with the Internal
Revenue Service and the Department of the Treasury) to provide
a tax complexity analysis. The complexity analysis is required
for all legislation reported by the Senate Committee on
Finance, the House Committee on Ways and Means, or any
committee of conference if the legislation includes a provision
that directly or indirectly amends the Internal Revenue Code
and has widespread applicability to individuals or small
businesses.
The staff of the Joint Committee on Taxation has determined
that a complexity analysis is not required under section
4022(b) of the IRS Reform Act because the bill contains no
provisions that amend the Code and that have ``widespread
applicability'' to individuals or small businesses.
G. Limited Tax Benefits
Pursuant to clause 9 of rule XXI of the Rules of the House
of Representatives, the Ways and Means Committee has determined
that the bill as reported contains no congressional earmarks,
limited tax benefits, or limited tariff benefits within the
meaning of that Rule.
VI. CHANGES IN EXISTING LAW MADE BY THE BILL, AS REPORTED
In compliance with clause 3(e) of rule XIII of the Rules of
the House of Representatives, changes in existing law made by
the bill, as reported, are shown as follows (existing law
proposed to be omitted is enclosed in black brackets, new
matter is printed in italic, existing law in which no change is
proposed is shown in roman):
EMPLOYEE RETIREMENT INCOME SECURITY ACT OF 1974
* * * * * * *
TITLE I--PROTECTION OF EMPLOYEE BENEFIT RIGHTS
* * * * * * *
Subtitle B--Regulatory Provisions
* * * * * * *
Part 5--Administration and Enforcement
* * * * * * *
CIVIL ENFORCEMENT
Sec. 502. (a) * * *
* * * * * * *
(n) Enforcement of Genetic Nondiscrimination Requirements.--
(1) Injunctive relief for irreparable harm.--With
respect to any violation of subsection (a)(1)(F),
(b)(3), or (c) of section 702, a participant or
beneficiary may seek relief under subsection
502(a)(1)(B) prior to the exhaustion of available
administrative remedies under section 503 if it is
demonstrated to the court, by a preponderance of the
evidence, that the exhaustion of such remedies would
cause irreparable harm to the health of the participant
or beneficiary. Any determinations that already have
been made under section 503 in such case, or that are
made in such case while an action under this paragraph
is pending, shall be given due consideration by the
court in any action under this subsection in such case.
(2) Equitable relief for genetic nondiscrimination.--
(A) Reinstatement of benefits where equitable
relief has been awarded.--The recovery of
benefits by a participant or beneficiary under
a civil action under this section may include
an administrative penalty under subparagraph
(B) and the retroactive reinstatement of
coverage under the plan involved to the date on
which the participant or beneficiary was denied
eligibility for coverage if--
(i) the civil action was commenced
under subsection (a)(1)(B); and
(ii) the denial of coverage on which
such civil action was based constitutes
a violation of subsection (a)(1)(F),
(b)(3), or (c) of section 702.
(B) Administrative penalty.--
(i) In general.--An administrator who
fails to comply with the requirements
of subsection (a)(1)(F), (b)(3), or (c)
of section 702 with respect to a
participant or beneficiary may, in an
action commenced under subsection
(a)(1)(B), be personally liable in the
discretion of the court, for a penalty
in the amount not more than $100 for
each day in the noncompliance period.
(ii) Noncompliance period.--For
purposes of clause (i), the term
``noncompliance period'' means the
period--
(I) beginning on the date
that a failure described in
clause (i) occurs; and
(II) ending on the date that
such failure is corrected.
(iii) Payment to participant or
beneficiary.--A penalty collected under
this subparagraph shall be paid to the
participant or beneficiary involved.
(3) Secretarial enforcement authority.--
(A) General rule.--The Secretary has the
authority to impose a penalty on any failure of
a group health plan to meet the requirements of
subsection (a)(1)(F), (b)(3), or (c) of section
702.
(B) Amount.--
(i) In general.--The amount of the
penalty imposed by subparagraph (A)
shall be $100 for each day in the
noncompliance period with respect to
each individual to whom such failure
relates.
(ii) Noncompliance period.--For
purposes of this paragraph, the term
``noncompliance period'' means, with
respect to any failure, the period--
(I) beginning on the date
such failure first occurs; and
(II) ending on the date such
failure is corrected.
(C) Minimum penalties where failure
discovered.--Notwithstanding clauses (i) and
(ii) of subparagraph (D):
(i) In general.--In the case of 1 or
more failures with respect to an
individual--
(I) which are not corrected
before the date on which the
plan receives a notice from the
Secretary of such violation;
and
(II) which occurred or
continued during the period
involved;
the amount of penalty imposed by
subparagraph (A) by reason of such
failures with respect to such
individual shall not be less than
$2,500.
(ii) Higher minimum penalty where
violations are more than de minimis.--
To the extent violations for which any
person is liable under this paragraph
for any year are more than de minimis,
clause (i) shall be applied by
substituting ``$15,000'' for ``$2,500''
with respect to such person.
(D) Limitations.--
(i) Penalty not to apply where
failure not discovered exercising
reasonable diligence.--No penalty shall
be imposed by subparagraph (A) on any
failure during any period for which it
is established to the satisfaction of
the Secretary that the person otherwise
liable for such penalty did not know,
and exercising reasonable diligence
would not have known, that such failure
existed.
(ii) Penalty not to apply to failures
corrected within certain periods.--No
penalty shall be imposed by
subparagraph (A) on any failure if--
(I) such failure was due to
reasonable cause and not to
willful neglect; and
(II) such failure is
corrected during the 30-day
period beginning on the first
date the person otherwise
liable for such penalty knew,
or exercising reasonable
diligence would have known,
that such failure existed.
(iii) Overall limitation for
unintentional failures.--In the case of
failures which are due to reasonable
cause and not to willful neglect, the
penalty imposed by subparagraph (A) for
failures shall not exceed the amount
equal to the lesser of--
(I) 10 percent of the
aggregate amount paid or
incurred by the employer (or
predecessor employer) during
the preceding taxable year for
group health plans; or
(II) $500,000.
(E) Waiver by secretary.--In the case of a
failure which is due to reasonable cause and
not to willful neglect, the Secretary may waive
part or all of the penalty imposed by
subparagraph (A) to the extent that the payment
of such penalty would be excessive relative to
the failure involved.
* * * * * * *
Part 7--Group Health Plan Requirements
Subpart A--Requirements Relating to Portability, Access, and
Renewability
* * * * * * *
SEC. 702. PROHIBITING DISCRIMINATION AGAINST INDIVIDUAL PARTICIPANTS
AND BENEFICIARIES BASED ON HEALTH STATUS.
(a) In Eligibility To Enroll.--
(1) In general.--Subject to paragraph (2), a group
health plan, and a health insurance issuer offering
group health insurance coverage in connection with a
group health plan, may not establish rules for
eligibility (including continued eligibility) of any
individual to enroll under the terms of the plan based
on any of the following health status-related factors
in relation to the individual or a dependent of the
individual:
(A) * * *
* * * * * * *
(F) Genetic information (including
information about a request for or receipt of
genetic services by an individual or family
member of such individual).
* * * * * * *
(b) In Premium Contributions.--
(1) * * *
(2) Construction.--Nothing in paragraph (1) shall be
construed--
(A) to restrict the amount that an employer
may be charged for coverage under a group
health plan except as provided in paragraph
(3); or
* * * * * * *
(3) No discrimination in group premiums based on
genetic information.--For purposes of this section, a
group health plan, or a health insurance issuer
offering group health insurance coverage in connection
with a group health plan, shall not adjust premium or
contribution amounts for a group on the basis of
genetic information concerning an individual in the
group or a family member of the individual (including
information about a request for or receipt of genetic
services by an individual or family member of such
individual).
(c) Genetic Testing.--
(1) Limitation on requesting or requiring genetic
testing.--A group health plan, or 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.--Nothing in this part shall
be construed to--
(A) limit the authority of a health care
professional who is providing health care
services with respect to an individual to
request that such individual or a family member
of such individual undergo a genetic test;
(B) limit the authority of a health care
professional who is employed by or affiliated
with a group health plan or a health insurance
issuer and who is providing health care
services to an individual as part of a bona
fide wellness program to notify such individual
of the availability of a genetic test or to
provide information to such individual
regarding such genetic test; or
(C) authorize or permit a health care
professional to require that an individual
undergo a genetic test.
(d) Application to All Plans.--The provisions of subsections
(a)(1)(F), (b)(3), and (c) shall apply to group health plans
and health insurance issuers without regard to section 732(a).
* * * * * * *
Subpart C--General Provisions
* * * * * * *
SEC. 733. DEFINITIONS.
(a) * * *
* * * * * * *
(d) Other Definitions.--For purposes of this part--
(1) * * *
* * * * * * *
(5) Family member.--The term ``family member'' means
with respect to an individual--
(A) the spouse of the individual;
(B) a dependent child of the individual,
including a child who is born to or placed for
adoption with the individual; and
(C) all other individuals related by blood to
the individual or the spouse or child described
in subparagraph (A) or (B).
(6) Genetic information.--
(A) In general.--Except as provided in
subparagraph (B), the term ``genetic
information'' means information about--
(i) an individual's genetic tests;
(ii) the genetic tests of family
members of the individual; or
(iii) the occurrence of a disease or
disorder in family members of the
individual.
(B) Exclusions.--The term ``genetic
information'' shall not include information
about the sex or age of an individual.
(7) 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.
(8) Genetic services.--The term ``genetic services''
means--
(A) a genetic test;
(B) genetic counseling (such as obtaining,
interpreting, or assessing genetic
information); or
(C) genetic education.
* * * * * * *
----------
PUBLIC HEALTH SERVICE ACT
* * * * * * *
TITLE XXVII--REQUIREMENTS RELATING TO HEALTH INSURANCE COVERAGE
Part A--Group Market Reforms
Subpart 1--Portability, Access, and Renewability Requirements
* * * * * * *
SEC. 2702. PROHIBITING DISCRIMINATION AGAINST INDIVIDUAL PARTICIPANTS
AND BENEFICIARIES BASED ON HEALTH STATUS.
(a) In Eligibility To Enroll.--
(1) In general.--Subject to paragraph (2), a group
health plan, and a health insurance issuer offering
group health insurance coverage in connection with a
group health plan, may not establish rules for
eligibility (including continued eligibility) of any
individual to enroll under the terms of the plan based
on any of the following health status-related factors
in relation to the individual or a dependent of the
individual:
(A) * * *
* * * * * * *
(F) Genetic information (including
information about a request for or receipt of
genetic services by an individual or family
member of such individual).
* * * * * * *
(b) In Premium Contributions.--
(1) * * *
(2) Construction.--Nothing in paragraph (1) shall be
construed--
(A) to restrict the amount that an employer
may be charged for coverage under a group
health plan, except as provided in paragraph
(3); or
* * * * * * *
(3) No discrimination in group premiums based on
genetic information.--For purposes of this section, a
group health plan, or a health insurance issuer
offering group health insurance coverage in connection
with a group health plan, shall not adjust premium or
contribution amounts for a group on the basis of
genetic information concerning an individual in the
group or a family member of the individual (including
information about a request for or receipt of genetic
services by an individual or family member of such
individual).
(c) Genetic Testing.--
(1) Limitation on requesting or requiring genetic
testing.--A group health plan, or 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.--Nothing in this part shall
be construed to--
(A) limit the authority of a health care
professional who is providing health care
services with respect to an individual to
request that such individual or a family member
of such individual undergo a genetic test;
(B) limit the authority of a health care
professional who is employed by or affiliated
with a group health plan or a health insurance
issuer and who is providing health care
services to an individual as part of a bona
fide wellness program to notify such individual
of the availability of a genetic test or to
provide information to such individual
regarding such genetic test; or
(C) authorize or permit a health care
professional to require that an individual
undergo a genetic test.
(d) Application to All Plans.--The provisions of subsections
(a)(1)(F), (b)(3), and (c) shall apply to group health plans
and health insurance issuers without regard to section 2721(a).
* * * * * * *
Subpart 4--Exclusion of Plans; Enforcement; Preemption
SEC. 2721. EXCLUSION OF CERTAIN PLANS.
(a) * * *
(b) Limitation on Application of Provisions Relating to Group
Health Plans.--
(1) * * *
(2) Treatment of nonfederal governmental plans.--
(A) Election to be excluded.--[If the plan
sponsor] Except as provided in subparagraph
(D), if the plan sponsor of a nonfederal
governmental plan which is a group health plan
to which the provisions of subparts 1 through 3
otherwise apply makes an election under this
subparagraph (in such form and manner as the
Secretary may by regulations prescribe), then
the requirements of such subparts insofar as
they apply directly to group health plans (and
not merely to group health insurance coverage)
shall not apply to such governmental plans for
such period except as provided in this
paragraph.
* * * * * * *
(D) Election not applicable to requirements
concerning genetic information.--The election
described in subparagraph (A) shall not be
available with respect to the provisions of
subsections (a)(1)(F) and (c) of section 2702
and the provisions of section 2702(b) to the
extent that such provisions apply to genetic
information (or information about a request for
or the receipt of genetic services by an
individual or a family member of such
individual).
SEC. 2722. ENFORCEMENT.
(a) * * *
(b) Secretarial Enforcement Authority.--
(1) * * *
* * * * * * *
(3) Enforcement authority relating to genetic
discrimination.--
(A) General rule.--In the cases described in
paragraph (1), notwithstanding the provisions
of paragraph (2)(C), the following provisions
shall apply with respect to an action under
this subsection by the Secretary with respect
to any failure of a health insurance issuer in
connection with a group health plan, to meet
the requirements of subsection (a)(1)(F),
(b)(3), or (c) of section 2702.
(B) Amount.--
(i) In general.--The amount of the
penalty imposed under this paragraph
shall be $100 for each day in the
noncompliance period with respect to
each individual to whom such failure
relates.
(ii) Noncompliance period.--For
purposes of this paragraph, the term
``noncompliance period'' means, with
respect to any failure, the period--
(I) beginning on the date
such failure first occurs; and
(II) ending on the date such
failure is corrected.
(C) Minimum penalties where failure
discovered.--Notwithstanding clauses (i) and
(ii) of subparagraph (D):
(i) In general.--In the case of 1 or
more failures with respect to an
individual--
(I) which are not corrected
before the date on which the
plan receives a notice from the
Secretary of such violation;
and
(II) which occurred or
continued during the period
involved;
the amount of penalty imposed by
subparagraph (A) by reason of such
failures with respect to such
individual shall not be less than
$2,500.
(ii) Higher minimum penalty where
violations are more than de minimis.--
To the extent violations for which any
person is liable under this paragraph
for any year are more than de minimis,
clause (i) shall be applied by
substituting ``$15,000'' for ``$2,500''
with respect to such person.
(D) Limitations.--
(i) Penalty not to apply where
failure not discovered exercising
reasonable diligence.--No penalty shall
be imposed by subparagraph (A) on any
failure during any period for which it
is established to the satisfaction of
the Secretary that the person otherwise
liable for such penalty did not know,
and exercising reasonable diligence
would not have known, that such failure
existed.
(ii) Penalty not to apply to failures
corrected within certain periods.--No
penalty shall be imposed by
subparagraph (A) on any failure if--
(I) such failure was due to
reasonable cause and not to
willful neglect; and
(II) such failure is
corrected during the 30-day
period beginning on the first
date the person otherwise
liable for such penalty knew,
or exercising reasonable
diligence would have known,
that such failure existed.
(iii) Overall limitation for
unintentional failures.--In the case of
failures which are due to reasonable
cause and not to willful neglect, the
penalty imposed by subparagraph (A) for
failures shall not exceed the amount
equal to the lesser of--
(I) 10 percent of the
aggregate amount paid or
incurred by the employer (or
predecessor employer) during
the preceding taxable year for
group health plans; or
(II) $500,000.
(E) Waiver by secretary.--In the case of a
failure which is due to reasonable cause and
not to willful neglect, the Secretary may waive
part or all of the penalty imposed by
subparagraph (A) to the extent that the payment
of such penalty would be excessive relative to
the failure involved.
* * * * * * *
Part B--Individual Market Rules
* * * * * * *
Subpart [3] 2--Other Requirements
* * * * * * *
SEC. 2753. PROHIBITION OF HEALTH DISCRIMINATION ON THE BASIS OF GENETIC
INFORMATION.
(a) Prohibition on Genetic Information as a Condition of
Eligibility.--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 (including information
about a request for or receipt of genetic services by an
individual or family member of such individual).
(b) Prohibition on Genetic Information in Setting Premium
Rates.--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 (including information about a request for or
receipt of genetic services by an individual or family member
of such individual).
(c) 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.--Nothing in this part shall
be construed to--
(A) limit the authority of a health care
professional who is providing health care
services with respect to an individual to
request that such individual or a family member
of such individual undergo a genetic test;
(B) limit the authority of a health care
professional who is employed by or affiliated
with a health insurance issuer and who is
providing health care services to an individual
as part of a bona fide wellness program to
notify such individual of the availability of a
genetic test or to provide information to such
individual regarding such genetic test; or
(C) authorize or permit a health care
professional to require that an individual
undergo a genetic test.
Subpart 3--General Provisions
SEC. 2761. ENFORCEMENT.
(a) * * *
[(b) Secretarial Enforcement Authority.--The Secretary shall
have the same authority in relation to enforcement of the
provisions of this part with respect to issuers of health
insurance coverage in the individual market in a State as the
Secretary has under section 2722(b)(2) in relation to the
enforcement of the provisions of part A with respect to issuers
of health insurance coverage in the small group market in the
State.]
(b) Secretarial Enforcement Authority.--The Secretary shall
have the same authority in relation to enforcement of the
provisions of this part with respect to issuers of health
insurance coverage in the individual market in a State as the
Secretary has under section 2722(b)(2), and section 2722(b)(3)
with respect to violations of genetic nondiscrimination
provisions, in relation to the enforcement of the provisions of
part A with respect to issuers of health insurance coverage in
the small group market in the State.
* * * * * * *
Part C--Definitions; Miscellaneous Provisions
SEC. 2791. DEFINITIONS.
(a) * * *
* * * * * * *
(d) Other Definitions.--
(1) * * *
* * * * * * *
(15) Family member.--The term ``family member'' means
with respect to an individual--
(A) the spouse of the individual;
(B) a dependent child of the individual,
including a child who is born to or placed for
adoption with the individual; and
(C) all other individuals related by blood to
the individual or the spouse or child described
in subparagraph (A) or (B).
(16) Genetic information.--
(A) In general.--Except as provided in
subparagraph (B), the term ``genetic
information'' means information about--
(i) an individual's genetic tests;
(ii) the genetic tests of family
members of the individual; or
(iii) the occurrence of a disease or
disorder in family members of the
individual.
(B) Exclusions.--The term ``genetic
information'' shall not include information
about the sex or age of an individual.
(17) 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.
(18) Genetic services.--The term ``genetic services''
means--
(A) a genetic test;
(B) genetic counseling (such as obtaining,
interpreting, or assessing genetic
information); or
(C) genetic education.
* * * * * * *
----------
INTERNAL REVENUE CODE OF 1986
* * * * * * *
Subtitle K--Group Health Plan Requirements
* * * * * * *
CHAPTER 100--GROUP HEALTH PLAN REQUIREMENTS
* * * * * * *
Subchapter A--Requirements Relating to Portability, Access, and
Renewability
* * * * * * *
SEC. 9802. PROHIBITING DISCRIMINATION AGAINST INDIVIDUAL PARTICIPANTS
AND BENEFICIARIES BASED ON HEALTH STATUS.
(a) * * *
(b) In Premium Contributions.--
(1) * * *
(2) Construction.--Nothing in paragraph (1) shall be
construed
(A) to restrict the amount that an employer
may be charged for coverage under a group
health plan except as provided in paragraph
(3); or
* * * * * * *
(3) No group-based discrimination on basis of genetic
information.--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.
(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) Exception for health care professionals.--
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) Provision of information not prohibited.--
Paragraph (1) shall not be construed to limit the
authority of a group health plan--
(A) to provide information generally about
the availability of genetic tests, or
(B) to provide information about genetic
tests to a health care professional with
respect to the treatment of an individual to
whom such professional is providing health care
services.
(d) Prohibition on Collection of Genetic Information.--
(1) In general.--A group health plan shall not
request, require, or purchase genetic information for
purposes of underwriting (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) shall apply to group health
plans without regard to section 9831(a).
[(c)] (f) Special rules for church plans.--A church plan (as
defined in section 414(e)) shall not be treated as failing to
meet the requirements of this section solely because such plan
requires evidence of good health for coverage of--
(1) * * *
* * * * * * *
Subchapter C--General Provisions
Sec. 9831. General exceptions.
* * * * * * *
Sec. 9834. Enforcement.
* * * * * * *
SEC. 9832. DEFINITIONS.
(a) * * *
* * * * * * *
(d) Other definitions.--For purposes of this chapter--
(1) * * *
* * * * * * *
(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 occurrence 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 genetic services, receipt of
genetic services, or participation in any
clinical research, or any other program, 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.
(D) Application to family members covered
under same plan.--Information described in
clause (iii) of subparagraph (A) shall not be
treated as genetic information to the extent
that such information is taken into account
only with respect to the individual in which
such disease or disorder occurs and not as
genetic information with respect to any other
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.
(9) Genetic services.--The term ``genetic services''
means--
(A) a genetic test,
(B) genetic counseling (such as obtaining,
interpreting, or assessing genetic
information), and
(C) genetic education.
(10) Underwriting.--The term ``underwriting'' means,
with respect to any group health plan--
(A) rules for eligibility (including
enrollment and continued eligibility) for, or
determination of, benefits under the plan,
(B) the computation of premium or
contribution amounts under the plan,
(C) the application of any pre-existing
condition exclusion under the plan, and
(D) other activities related to the creation,
renewal, or replacement of a contract of health
insurance or health benefits.
SEC. 9834. ENFORCEMENT.
For the imposition of tax on any failure of a group health
plan to meet the requirements of this chapter, see section
4980D.
* * * * * * *
----------
SOCIAL SECURITY ACT
* * * * * * *
TITLE XI--GENERAL PROVISIONS, PEER REVIEW, AND ADMINISTRATIVE
SIMPLIFICATION
* * * * * * *
Part C--Administrative Simplification
* * * * * * *
APPLICATION OF HIPAA REGULATIONS TO GENETIC INFORMATION
Sec. 1180. (a) In General.--The Secretary of Health and
Human Services 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 plan,
coverage, or 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 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.
(c) Procedure.--The revisions under subsection (a) shall be
made by notice in the Federal Register published not later than
60 days after the date of the enactment of this section and
shall be effective upon publication, without opportunity for
any prior public comment, but may be revised, consistent with
this section, after opportunity for public comment.
* * * * * * *
TITLE XVIII OF THE SOCIAL SECURITY ACT
Part E--Miscellaneous Provisions
* * * * * * *
CERTIFICATION OF MEDICARE SUPPLEMENTAL HEALTH INSURANCE POLICIES
Sec. 1882. (a) * * *
* * * * * * *
(o) The requirements of this subsection are as follows:
(1) * * *
* * * * * * *
(4) The issuer of the medicare supplemental policy
(as defined in subsection (x)) complies with subsection
(s)(2)(E) and subsection (x).
* * * * * * *
(s)(1) * * *
(2)(A) * * *
* * * * * * *
(E) An issuer of a medicare supplemental policy shall not
deny or condition the issuance or effectiveness of the policy
(including the imposition of any exclusion of benefits under
the policy based on a pre-existing condition) and shall not
discriminate in the pricing of the policy (including the
adjustment of premium rates) of an individual on the basis of
the genetic information with respect to such individual.
* * * * * * *
(x) Limitations on Genetic Testing and Collection of Genetic
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) Exception for health care
professionals.--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) Provision of information not
prohibited.--Subparagraph (A) shall not be
construed to limit the authority of an issuer
of a medicare supplemental policy--
(i) to provide information generally
about the availability of genetic
tests, or
(ii) to provide information about
genetic tests to a health care
professional with respect to the
treatment of an individual to whom such
professional is providing health care
services.
(2) Prohibition on collection of genetic
information.--
(A) In general.--An issuer of a medicare
supplemental policy shall not request, require,
or purchase genetic information for purposes of
underwriting.
(B) Limitation relating to the collection of
genetic information prior to enrollment.--An
issuer of a medicare supplemental policy shall
not request, require, or purchase genetic
information concerning any individual prior to
such individual's enrollment under the policy
or in connection with such enrollment.
(C) Incidental collection.--Where an issuer
of a medicare supplemental policy obtains
genetic information incidental to the
requesting, requiring, or purchasing of other
information concerning an enrollee, such
request, requirement, or purchase shall not be
considered a violation of this paragraph if
such request, requirement, or purchase is not
in violation of subparagraph (A).
(3) Definitions.--In this subsection and subsection
(s)(2)(E):
(A) Family member.--The term ``family
member'' means, with respect to any individual,
any individual who is a first-degree, second-
degree, third-degree, or fourth-degree relative
of such individual.
(B) Genetic information.--
(i) 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 occurrence of a
disease or disorder in family
members of such individual.
(ii) Inclusion of genetic services
and participation in genetic
research.--Such term includes, with
respect to any individual, any request
for genetic services, receipt of
genetic services, or participation in
any clinical research, or any other
program, which includes genetic
services, by such individual or any
family member of such individual.
(iii) Exclusions.--The term ``genetic
information'' shall not include
information about the sex or age of an
individual.
(C) Genetic test.--
(i) In general.--The term ``genetic
test'' means an analysis of human DNA,
RNA, chromosomes, proteins, or
metabolites, that detects genotypes,
mutations, or chromosomal changes.
(ii) 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.
(D) Genetic services.--The term ``genetic
services'' means--
(i) a genetic test;
(ii) genetic counseling (such as
obtaining, interpreting, or assessing
genetic information); and
(iii) genetic education.
(E) Underwriting.--The term ``underwriting''
means, with respect to a medicare supplemental
policy--
(i) rules for eligibility (including
enrollment and continued eligibility)
for, or determination of, benefits
under the policy;
(ii) the computation of premium or
contribution amounts under the policy;
(iii) the application of any pre-
existing condition exclusion under the
policy; and
(iv) other activities related to the
creation, renewal, or replacement of a
contract of health insurance or health
benefits.
(F) Issuer of a medicare supplemental
policy.--The term ``issuer of a medicare
supplemental policy'' includes a third-party
administrator or other person acting for or on
behalf of such issuer.
* * * * * * *
VII. ADDITIONAL VIEWS
At the time of the Ways and Means Committee markup, a
bipartisan compromise was being developed by the House Energy
and Commerce Committee to extend protections to genetic
information of a fetus or embryo. However, an agreement had not
yet been reached. The Energy and Commerce Committee has since
reached an agreement and adopted an amendment to extend these
protections. We request that the changes brought about by this
bipartisan compromise be incorporated into all relevant
sections before the bill moves to the House floor.
Jim McCrery.
Wally Herger.
Ron Lewis.
Dave Camp.
Sam Johnson.