Congressional Record, Volume 153 Issue 67 (Wednesday, April 25, 2007)

[Congressional Record Volume 153, Number 67 (Wednesday, April 25, 2007)]
[House]
[Pages H4083-H4101]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

GENETIC INFORMATION NONDISCRIMINATION ACT OF 2007

Mr. GEORGE MILLER of California. Mr. Speaker, I move to suspend the
rules and pass the bill (H.R. 493) to prohibit discrimination on the
basis of genetic information with respect to health insurance and
employment, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:

H.R. 493

Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

(a) Short Title.--This Act may be cited as the ``Genetic
Information Nondiscrimination Act of 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.

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 PROVISIONS

Sec. 301. Guarantee agency collection retention.
Sec. 302. 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

[[Page H4084]]

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) 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--
(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, and a health insurance issuer offering group health
insurance coverage in connection with 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; Prohibition on
Collection of Genetic Information; Application to All
Plans.--Section 702 of the Employee Retirement Income
Security Act of 1974 (29 U.S.C. 1182) is amended by adding at
the end the following:
``(c) Genetic Testing.--
``(1) Limitation on requesting or requiring genetic
testing.--A group health plan, and a health insurance issuer
offering health insurance coverage in connection with a group
health plan, shall not request or require an individual or a
family member of such individual to undergo a genetic test.
``(2) Rule of construction.--Paragraph (1) shall not be
construed to limit the authority of a health care
professional who is providing health care services to an
individual to request that such individual undergo a genetic
test.
``(3) Rule of construction regarding payment.--
``(A) In general.--Nothing in paragraph (1) shall be
construed to preclude a group health plan, or a health
insurance issuer offering health insurance coverage in
connection with a group health plan, from obtaining and using
the results of a genetic test in making a determination
regarding payment (as such term is defined for the purposes
of applying the regulations promulgated by the Secretary of
Health and Human Services under part C of title XI of the
Social Security Act and section 264 of the Health Insurance
Portability and Accountability Act of 1996, as may be revised
from time to time) consistent with subsection (a).
``(B) Limitation.--For purposes of subparagraph (A), a
group health plan, or a health insurance issuer offering
health insurance coverage in connection with a group health
plan, may request only the minimum amount of information
necessary to accomplish the intended purpose.
``(4) Research exception.--Notwithstanding paragraph (1), a
group health plan, or a health insurance issuer offering
health insurance coverage in connection with a group health
plan, may request, but not require, that a participant or
beneficiary undergo a genetic test if each of the following
conditions is met:
``(A) The request is made, in writing, pursuant to research
that complies with part 46 of title 45, Code of Federal
Regulations, or equivalent Federal regulations, and any
applicable State or local law or regulations for the
protection of human subjects in research.
``(B) The plan or issuer clearly indicates to each
participant or beneficiary, or in the case of a minor child,
to the legal guardian of such beneficiary, to whom the
request is made that--
``(i) compliance with the request is voluntary; and
``(ii) non-compliance will have no effect on enrollment
status or premium or contribution amounts.
``(C) No genetic information collected or acquired under
this paragraph shall be used for underwriting purposes.
``(D) The plan or issuer notifies the Secretary in writing
that the plan or issuer is conducting activities pursuant to
the exception provided for under this paragraph, including a
description of the activities conducted.
``(E) The plan or issuer complies with such other
conditions as the Secretary may by regulation require for
activities conducted under this paragraph.
``(d) Prohibition on Collection of Genetic Information.--
``(1) In general.--A group health plan, and a health
insurance issuer offering health insurance coverage in
connection with a group health plan, shall not request,
require, or purchase genetic information for underwriting
purposes (as defined in section 733).
``(2) Prohibition on collection of genetic information
prior to enrollment.--A group health plan, and a health
insurance issuer offering health insurance coverage in
connection with a group health plan, shall not request,
require, or purchase genetic information with respect to any
individual prior to such individual's enrollment under the
plan or coverage in connection with such enrollment.
``(3) Incidental collection.--If a group health plan, or a
health insurance issuer offering health insurance coverage in
connection with a group health plan, obtains genetic
information incidental to the requesting, requiring, or
purchasing of other information concerning any individual,
such request, requirement, or purchase shall not be
considered a violation of paragraph (2) if such request,
requirement, or purchase is not in violation of paragraph
(1).
``(e) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), (c), and (d), and subsection
(b)(1) and section 701 with respect to genetic information,
shall apply to group health plans and health insurance
issuers without regard to section 732(a).''.
(c) Application to Genetic Information of a Fetus or
Embryo.--Such section is further amended by adding at the end
the following:
``(f) Genetic Information of a Fetus or Embryo.--Any
reference in this part to genetic information concerning an
individual or family member of an individual shall--
``(1) with respect to such an individual or family member
of an individual who is a pregnant woman, include genetic
information of any fetus carried by such pregnant woman; and
``(2) with respect to an individual or family member
utilizing an assisted reproductive technology, include
genetic information of any embryo legally held by the
individual or family member.''.
(d) Definitions.--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) a dependent (as such term is used for purposes of
section 701(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).
``(6) 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) subject to subparagraph (D), the manifestation of a
disease or disorder in family members of such individual.
``(B) Inclusion of genetic services.--Such term includes,
with respect to any individual, any request for, or receipt
of, genetic services (including genetic services received

[[Page H4085]]

pursuant to participation in clinical research) 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 is
manifested and not as genetic information with respect to any
other 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 (including obtaining,
interpreting, or assessing genetic information); or
``(C) genetic education.
``(9) Underwriting purposes.--The term `underwriting
purposes' means, with respect to any group health plan, or
health insurance coverage offered in connection with a group
health plan--
``(A) rules for, or determination of, eligibility
(including enrollment and continued eligibility) for benefits
under the plan or coverage;
``(B) the computation of premium or contribution amounts
under the plan or coverage;
``(C) the application of any pre-existing condition
exclusion under the plan or coverage; and
``(D) other activities related to the creation, renewal, or
replacement of a contract of health insurance or health
benefits.''.
(e) ERISA Enforcement.--Section 502 of the Employee
Retirement Income Security Act of 1974 (29 U.S.C. 1132) is
amended--
(1) in subsection (a)(6), by striking ``(7), or (8)'' and
inserting ``(7), (8), or (9)''; and
(2) in subsection (c), by redesignating paragraph (9) as
paragraph (10), and by inserting after paragraph (8) the
following new paragraph:
``(9) Secretarial enforcement authority relating to use of
genetic information.--
``(A) General rule.--The Secretary may impose a penalty
against any plan sponsor of a group health plan, or any
health insurance issuer offering health insurance coverage in
connection with the plan, for any failure by such sponsor or
issuer to meet the requirements of subsection (a)(1)(F),
(b)(3), (c), or (d) of section 702 or section 701 or
702(b)(1) with respect to genetic information, in connection
with the plan.
``(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 participant or
beneficiary 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 the 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 a participant or beneficiary--

``(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 participant or
beneficiary 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 plan sponsor (or predecessor plan sponsor) 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.
``(F) Definitions.--Terms used in this paragraph which are
defined in section 733 shall have the meanings provided such
terms in such section.''.
(f) Regulations and Effective Date.--
(1) Regulations.--The Secretary of Labor shall issue final
regulations not later than 1 year after the date of 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
enactment of this Act.

SEC. 102. AMENDMENTS TO THE PUBLIC HEALTH SERVICE ACT.

(a) Amendments Relating to the Group Market.--
(1) 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--
(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 group-based discrimination on basis of genetic
information.--For purposes of this section, a group health
plan, and health insurance issuer offering group health
insurance coverage in connection with a group health plan,
may not adjust premium or contribution amounts for the group
covered under such plan on the basis of genetic
information.''.
(2) Limitations on genetic testing; prohibition on
collection of genetic information; application to all
plans.--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, and a health insurance issuer
offering health insurance coverage in connection with a group
health plan, shall not request or require an individual or a
family member of such individual to undergo a genetic test.
``(2) Rule of construction.--Paragraph (1) shall not be
construed to limit the authority of a health care
professional who is providing health care services to an
individual to request that such individual undergo a genetic
test.
``(3) Rule of construction regarding payment.--
``(A) In general.--Nothing in paragraph (1) shall be
construed to preclude a group health plan, or a health
insurance issuer offering health insurance coverage in
connection with a group health plan, from obtaining and using
the results of a genetic test in making a determination
regarding payment (as such term is defined for the purposes
of applying the regulations promulgated by the Secretary
under part C of title XI of the Social Security Act and
section 264 of the Health Insurance Portability and
Accountability Act of 1996, as may be revised from time to
time) consistent with subsection (a).
``(B) Limitation.--For purposes of subparagraph (A), a
group health plan, or a health insurance issuer offering
health insurance coverage in connection with a group health
plan, may request only the minimum amount of information
necessary to accomplish the intended purpose.
``(4) Research exception.--Notwithstanding paragraph (1), a
group health plan, or a health insurance issuer offering
health insurance coverage in connection with a group health
plan, may request, but not require, that a participant or
beneficiary undergo a genetic test if each of the following
conditions is met:
``(A) The request is made pursuant to research that
complies with part 46 of title 45, Code of Federal
Regulations, or equivalent Federal regulations, and any
applicable State or local law or regulations for the
protection of human subjects in research.
``(B) The plan or issuer clearly indicates to each
participant or beneficiary, or in the case of a minor child,
to the legal guardian of such beneficiary, to whom the
request is made that--
``(i) compliance with the request is voluntary; and
``(ii) non-compliance will have no effect on enrollment
status or premium or contribution amounts.
``(C) No genetic information collected or acquired under
this paragraph shall be used for underwriting purposes.
``(D) The plan or issuer notifies the Secretary in writing
that the plan or issuer is

[[Page H4086]]

conducting activities pursuant to the exception provided for
under this paragraph, including a description of the
activities conducted.
``(E) The plan or issuer complies with such other
conditions as the Secretary may by regulation require for
activities conducted under this paragraph.
``(d) Prohibition on Collection of Genetic Information.--
``(1) In general.--A group health plan, and a health
insurance issuer offering health insurance coverage in
connection with a group health plan, shall not request,
require, or purchase genetic information for underwriting
purposes (as defined in section 2791).
``(2) Prohibition on collection of genetic information
prior to enrollment.--A group health plan, and a health
insurance issuer offering health insurance coverage in
connection with a group health plan, shall not request,
require, or purchase genetic information with respect to any
individual prior to such individual's enrollment under the
plan or coverage in connection with such enrollment.
``(3) Incidental collection.--If a group health plan, or a
health insurance issuer offering health insurance coverage in
connection with a group health plan, obtains genetic
information incidental to the requesting, requiring, or
purchasing of other information concerning any individual,
such request, requirement, or purchase shall not be
considered a violation of paragraph (2) if such request,
requirement, or purchase is not in violation of paragraph
(1).
``(e) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), (c) , and (d) and subsection
(b)(1) and section 2701 with respect to genetic information,
shall apply to group health plans and health insurance
issuers without regard to section 2721(a).''.
(3) Application to genetic information of a fetus or
embryo.--Such section is further amended by adding at the end
the following:
``(f) Genetic Information of a Fetus or Embryo.--Any
reference in this part to genetic information concerning an
individual or family member of an individual shall--
``(1) with respect to such an individual or family member
of an individual who is a pregnant woman, include genetic
information of any fetus carried by such pregnant woman; and
``(2) with respect to an individual or family member
utilizing an assisted reproductive technology, include
genetic information of any embryo legally held by the
individual or family member.''.
(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 any individual--
``(A) a dependent (as such term is used for purposes of
section 2701(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).
``(16) 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) subject to subparagraph (D), the manifestation of a
disease or disorder in family members of such individual.
``(B) Inclusion of genetic services.--Such term includes,
with respect to any individual, any request for, or receipt
of, genetic services (including genetic services received
pursuant to participation in clinical research) 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 is
manifested and not as genetic information with respect to any
other 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 (including obtaining,
interpreting, or assessing genetic information); or
``(C) genetic education.
``(19) Underwriting purposes.--The term `underwriting
purposes' means, with respect to any group health plan, or
health insurance coverage offered in connection with a group
health plan--
``(A) rules for, or determination of, eligibility
(including enrollment and continued eligibility) for benefits
under the plan or coverage;
``(B) the computation of premium or contribution amounts
under the plan or coverage;
``(C) the application of any pre-existing condition
exclusion under the plan or coverage; and
``(D) other activities related to the creation, renewal, or
replacement of a contract of health insurance or health
benefits.''.
(5) 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
succeeding subparagraphs of this paragraph 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), (c), or (d) of section 2702
or section 2701 or 2702(b)(1) with respect to genetic
information in connection with the plan.
``(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 participant or
beneficiary 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 the 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) 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.''.
(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.

[[Page H4087]]

``(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.
``(c) Prohibition on Genetic Information as Preexisting
Condition.--A health insurance issuer offering health
insurance coverage in the individual market may not, on the
basis of genetic information, impose any preexisting
condition exclusion (as defined in section 2701(b)(1)(A))
with respect to such coverage.
``(d) Genetic Testing.--
``(1) Limitation on requesting or requiring genetic
testing.--A health insurance issuer offering health insurance
coverage in the individual market shall not request or
require an individual or a family member of such individual
to undergo a genetic test.
``(2) Rule of construction.--Paragraph (1) shall not be
construed to limit the authority of a health care
professional who is providing health care services to an
individual to request that such individual undergo a genetic
test.
``(3) Rule of construction regarding payment.--
``(A) In general.--Nothing in paragraph (1) shall be
construed to preclude a health insurance issuer offering
health insurance coverage in the individual market from
obtaining and using the results of a genetic test in making a
determination regarding payment (as such term is defined for
the purposes of applying the regulations promulgated by the
Secretary under part C of title XI of the Social Security Act
and section 264 of the Health Insurance Portability and
Accountability Act of 1996, as may be revised from time to
time) consistent with subsection (a) and (c).
``(B) Limitation.--For purposes of subparagraph (A), a
health insurance issuer offering health insurance coverage in
the individual market may request only the minimum amount of
information necessary to accomplish the intended purpose.
``(4) Research exception.--Notwithstanding paragraph (1), a
health insurance issuer offering health insurance coverage in
the individual market may request, but not require, that an
individual or a family member of such individual undergo a
genetic test if each of the following conditions is met:
``(A) The request is made pursuant to research that
complies with part 46 of title 45, Code of Federal
Regulations, or equivalent Federal regulations, and any
applicable State or local law or regulations for the
protection of human subjects in research.
``(B) The issuer clearly indicates to each individual, or
in the case of a minor child, to the legal guardian of such
child, to whom the request is made that--
``(i) compliance with the request is voluntary; and
``(ii) non-compliance will have no effect on enrollment
status or premium or contribution amounts.
``(C) No genetic information collected or acquired under
this paragraph shall be used for underwriting purposes.
``(D) The issuer notifies the Secretary in writing that the
issuer is conducting activities pursuant to the exception
provided for under this paragraph, including a description of
the activities conducted.
``(E) The issuer complies with such other conditions as the
Secretary may by regulation require for activities conducted
under this paragraph.
``(e) Prohibition on Collection of Genetic Information.--
``(1) In general.--A health insurance issuer offering
health insurance coverage in the individual market shall not
request, require, or purchase genetic information for
underwriting purposes (as defined in section 2791).
``(2) Prohibition on collection of genetic information
prior to enrollment.--A health insurance issuer offering
health insurance coverage in the individual market shall not
request, require, or purchase genetic information with
respect to any individual prior to such individual's
enrollment under the plan in connection with such enrollment.
``(3) Incidental collection.--If a health insurance issuer
offering health insurance coverage in the individual market
obtains genetic information incidental to the requesting,
requiring, or purchasing of other information concerning any
individual, such request, requirement, or purchase shall not
be considered a violation of paragraph (2) if such request,
requirement, or purchase is not in violation of paragraph
(1).
``(f) Genetic Information of a Fetus or Embryo.--Any
reference in this part to genetic information concerning an
individual or family member of an individual shall--
``(1) with respect to such an individual or family member
of an individual who is a pregnant woman, include genetic
information of any fetus carried by such pregnant woman; and
``(2) with respect to an individual or family member
utilizing an assisted reproductive technology, include
genetic information of any embryo legally held by the
individual or family member.''.
(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), (b)(3), (c), and (d) of section 2702
and the provisions of sections 2701 and 2702(b) to the extent
that such provisions apply to genetic information.''.
(d) Regulations and Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
enactment of this Act, the Secretary of Health and Human
Services shall issue final regulations 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 Act; 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 Act.

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; Prohibition on
Collection of Genetic Information; Application to All
Plans.--Section 9802 of such Code is amended by redesignating
subsection (c) as subsection (f) and by inserting after
subsection (b) the following new subsections:
``(c) Genetic Testing.--
``(1) Limitation on requesting or requiring genetic
testing.--A group health plan may not request or require an
individual or a family member of such individual to undergo a
genetic test.
``(2) Rule of construction.--Paragraph (1) shall not be
construed to limit the authority of a health care
professional who is providing health care services to an
individual to request that such individual undergo a genetic
test.
``(3) Rule of construction regarding payment.--
``(A) In general.--Nothing in paragraph (1) shall be
construed to preclude a group health plan from obtaining and
using the results of a genetic test in making a determination
regarding payment (as such term is defined for the purposes
of applying the regulations promulgated by the Secretary of
Health and Human Services under part C of title XI of the
Social Security Act and section 264 of the Health Insurance
Portability and Accountability Act of 1996, as may be revised
from time to time) consistent with subsection (a).
``(B) Limitation.--For purposes of subparagraph (A), a
group health plan may request only the minimum amount of
information necessary to accomplish the intended purpose.
``(4) Research exception.--Notwithstanding paragraph (1), a
group health plan may request, but not require, that a
participant or beneficiary undergo a genetic test if each of
the following conditions is met:
``(A) The request is made pursuant to research that
complies with part 46 of title 45, Code of Federal
Regulations, or equivalent Federal regulations, and any
applicable State or local law or regulations for the
protection of human subjects in research.
``(B) The plan clearly indicates to each participant or
beneficiary, or in the case of a minor child, to the legal
guardian of such beneficiary, to whom the request is made
that--
``(i) compliance with the request is voluntary; and
``(ii) non-compliance will have no effect on enrollment
status or premium or contribution amounts.
``(C) No genetic information collected or acquired under
this paragraph shall be used for underwriting purposes.
``(D) The plan notifies the Secretary in writing that the
plan is conducting activities pursuant to the exception
provided for under

[[Page H4088]]

this paragraph, including a description of the activities
conducted.
``(E) The plan complies with such other conditions as the
Secretary may by regulation require for activities conducted
under this paragraph.
``(d) Prohibition on Collection of Genetic Information.--
``(1) In general.--A group health plan shall not request,
require, or purchase genetic information for underwriting
purposes (as defined in section 9832).
``(2) Prohibition on collection of genetic information
prior to enrollment.--A group health plan shall not request,
require, or purchase genetic information with respect to any
individual prior to such individual's enrollment under the
plan or in connection with such enrollment.
``(3) Incidental collection.--If a group health plan
obtains genetic information incidental to the requesting,
requiring, or purchasing of other information concerning any
individual, such request, requirement, or purchase shall not
be considered a violation of paragraph (2) if such request,
requirement, or purchase is not in violation of paragraph
(1).
``(e) Application to All Plans.--The provisions of
subsections (a)(1)(F), (b)(3), (c), and (d) and subsection
(b)(1) and section 9801 with respect to genetic information,
shall apply to group health plans without regard to section
9831(a)(2).''.
(c) Application to Genetic Information of a Fetus or
Embryo.--Such section is further amended by adding at the end
the following:
``(f) Genetic Information of a Fetus or Embryo.--Any
reference in this chapter to genetic information concerning
an individual or family member of an individual shall--
``(1) with respect to such an individual or family member
of an individual who is a pregnant woman, include genetic
information of any fetus carried by such pregnant woman; and
``(2) with respect to an individual or family member
utilizing an assisted reproductive technology, include
genetic information of any embryo legally held by the
individual or family member.''.
(d) Definitions.--Subsection (d) of section 9832 of such
Code is amended by adding at the end the following:
``(6) Family member.--The term `family member' means, with
respect to any individual--
``(A) a dependent (as such term is used for purposes of
section 9801(f)(2)) of such individual, and
``(B) any other individual who is a first-degree, second-
degree, third-degree, or fourth-degree relative of such
individual or of an individual described in subparagraph (A).
``(7) Genetic information.--
``(A) In general.--The term `genetic information' means,
with respect to any individual, information about--
``(i) such individual's genetic tests,
``(ii) the genetic tests of family members of such
individual, and
``(iii) subject to subparagraph (D), the manifestation of a
disease or disorder in family members of such individual.
``(B) Inclusion of genetic services.--Such term includes,
with respect to any individual, any request for, or receipt
of, genetic services (including genetic services received
pursuant to participation in clinical research) 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 is
manifested 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 (including obtaining,
interpreting, or assessing genetic information); or
``(C) genetic education.
``(10) Underwriting purposes.--The term `underwriting
purposes' means, with respect to any group health plan ,or
health insurance coverage offered in connection with a group
health plan--
``(A) rules for, or determination of, eligibility
(including enrollment and continued eligibility) for benefits
under the plan or coverage;
``(B) the computation of premium or contribution amounts
under the plan or coverage;
``(C) the application of any pre-existing condition
exclusion under the plan or coverage; and
``(D) other activities related to the creation, renewal, or
replacement of a contract of health insurance or health
benefits.''.
(e) 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.''.
(f) Regulations and Effective Date.--
(1) Regulations.--The Secretary of the Treasury shall issue
final 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 Genetic
Information.--
(1) In general.--Section 1882 of the Social Security Act
(42 U.S.C. 1395ss) is amended by adding at the end the
following:
``(x) Limitations on Genetic Testing and Information.--
``(1) Genetic testing.--
``(A) Limitation on requesting or requiring genetic
testing.--An issuer of a medicare supplemental policy shall
not request or require an individual or a family member of
such individual to undergo a genetic test.
``(B) Rule of construction.--Subparagraph (A) shall not be
construed to limit the authority of a health care
professional who is providing health care services to an
individual to request that such individual undergo a genetic
test.
``(C) Rule of construction regarding payment.--
``(i) In general.--Nothing in subparagraph (A) shall be
construed to preclude an issuer of a medicare supplemental
policy from obtaining and using the results of a genetic test
in making a determination regarding payment (as such term is
defined for the purposes of applying the regulations
promulgated by the Secretary under part C of title XI and
section 264 of the Health Insurance Portability and
Accountability Act of 1996, as may be revised from time to
time) consistent with subsection (s)(2)(E).
``(ii) Limitation.--For purposes of clause (i), an issuer
of a medicare supplemental policy may request only the
minimum amount of information necessary to accomplish the
intended purpose.
``(D) Research exception.--Notwithstanding subparagraph
(A), an issuer of a medicare supplemental policy may request,
but not require, that an individual or a family member of
such individual undergo a genetic test if each of the
following conditions is met:
``(i) The request is made pursuant to research that
complies with part 46 of title 45, Code of Federal
Regulations, or equivalent Federal regulations, and any
applicable State or local law or regulations for the
protection of human subjects in research.
``(ii) The issuer clearly indicates to each individual, or
in the case of a minor child, to the legal guardian of such
child, to whom the request is made that--

``(I) compliance with the request is voluntary; and
``(II) non-compliance will have no effect on enrollment
status or premium or contribution amounts.

``(iii) No genetic information collected or acquired under
this subparagraph shall be used for underwriting,
determination of eligibility to enroll or maintain enrollment
status, premium rating, or the creation, renewal, or
replacement of a plan, contract, or coverage for health
insurance or health benefits.
``(iv) The issuer notifies the Secretary in writing that
the issuer is conducting activities pursuant to the exception
provided for under this subparagraph, including a description
of the activities conducted.
``(v) The issuer complies with such other conditions as the
Secretary may by regulation require for activities conducted
under this subparagraph.
``(2) Prohibition on collection of genetic information.--
``(A) In general.--An issuer of a medicare supplemental
policy shall not request, require, or purchase genetic
information for

[[Page H4089]]

underwriting purposes (as defined in paragraph (3)).
``(B) Prohibition on collection of genetic information
prior to enrollment.--An issuer of a medicare supplemental
policy shall not request, require, or purchase genetic
information with respect to any individual prior to such
individual's enrollment under the policy in connection with
such enrollment.
``(C) Incidental collection.--If an issuer of a medicare
supplemental policy obtains genetic information incidental to
the requesting, requiring, or purchasing of other information
concerning any individual, such request, requirement, or
purchase shall not be considered a violation of subparagraph
(B) if such request, requirement, or purchase is not in
violation of subparagraph (A).
``(3) Definitions.--In this subsection:
``(A) Family member.--The term `family member' means with
respect to an individual, any other 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) subject to clause (iv), the manifestation of a
disease or disorder in family members of such individual.

``(ii) Inclusion of genetic services.--Such term includes,
with respect to any individual, any request for, or receipt
of, genetic services (including genetic services received
pursuant to participation in clinical research) 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 any
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 (including obtaining,
interpreting, or assessing genetic information); or
``(iii) genetic education.
``(E) Underwriting purposes.--The term `underwriting
purposes' means, with respect to a medicare supplemental
policy--
``(i) rules for, or determination of, eligibility
(including enrollment and continued eligibility) for 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) Application to genetic information of a fetus or
embryo.--Section 1882(x) of such Act, as added by paragraph
(1), is further amended by adding at the end the following:
``(4) Genetic information of a fetus or embryo.--Any
reference in this section to genetic information concerning
an individual or family member of an individual shall--
``(A) with respect to such an individual or family member
of an individual who is a pregnant woman, include genetic
information of any fetus carried by such pregnant woman; and
``(B) with respect to an individual or family member
utilizing an assisted reproductive technology, include
genetic information of any embryo legally held by the
individual or family member.''.
(3) Conforming amendment.--Section 1882(o) of the Social
Security Act (42 U.S.C. 1395ss(o)) is amended by adding at
the end the following:
``(4) The issuer of the medicare supplemental policy
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.

(a) In General.--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 shall revise
the HIPAA privacy regulation (as defined in subsection (b))
so it is consistent with the following:
``(1) Genetic information shall be treated as health
information described in section 1171(4)(B).
``(2) The use or disclosure by a covered entity that is a
group health plan, health insurance issuer that issues health
insurance coverage, or issuer of a medicare supplemental
policy of protected health information that is genetic
information about an individual for underwriting purposes
under the group health plan, health insurance coverage, or
medicare supplemental policy shall not be a permitted use or
disclosure.
``(b) Definitions.--For purposes of this section:
``(1) Genetic information; genetic test; family member.--
The terms `genetic information', `genetic test', and `family
member' have the meanings given such terms in section 2791 of
the Public Health Service Act (42 U.S.C. 300gg-91), as
amended by the Genetic Information Nondiscrimination Act of
2007.
``(2) Group health plan; health insurance coverage;
medicare supplemental policy.--The terms `group health plan'
and `health insurance coverage' have the meanings given such
terms under section 2791 of the Public Health Service Act (42
U.S.C. 300gg-91), and the term `medicare supplemental policy'
has the meaning given such term in section 1882(g).
``(3) HIPAA privacy regulation.--The term `HIPAA privacy
regulation' means the regulations promulgated by the
Secretary under this part and section 264 of the Health
Insurance Portability and Accountability Act of 1996 (42
U.S.C. 1320d-2 note).
``(4) Underwriting purposes.--The term `underwriting
purposes' means, with respect to a group health plan, health
insurance coverage, or a medicare supplemental policy--
``(A) rules for 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.
``(d) Enforcement.--In addition to any other sanctions or
remedies that may be available under law, a covered entity
that is a group health plan, health insurance issuer, or
issuer of a medicare supplemental policy and that violates
the HIPAA privacy regulation (as revised under subsection (a)
or otherwise) with respect to the use or disclosure

[[Page H4090]]

of genetic information shall be subject to the penalties
described in sections 1176 and 1177 in the same manner and to
the same extent that such penalties apply to violations of
this part.''.
(b) Regulations; Effective Date.--
(1) Regulations.--Not later than 1 year after the date of
the enactment of this Act, the Secretary of Health and Human
Services shall issue final regulations to carry out the
revision required by section 1180(a) of the Social Security
Act, as added by subsection (a). The Secretary has the sole
authority to promulgate such regulations, but shall
promulgate such regulations in consultation with the
Secretaries of Labor and the Treasury.
(2) Effective date.--The amendment made by subsection (a)
shall take effect on the date that is 18 months after the
date of the enactment of this Act.

SEC. 106. ASSURING COORDINATION.

Except as provided in section 105(b)(1), the Secretary of
Health and Human Services, the Secretary of Labor, and the
Secretary of the Treasury 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.

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) a dependent (as such term is used for purposes of
section 701(f)(2) of the Employee Retirement Income Security
Act of 1974) 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).
(4) 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) subject to subparagraph (D), the manifestation of a
disease or disorder in family members of such individual.
(B) Inclusion of genetic services.--Such term includes,
with respect to any individual, any request for, or receipt
of, genetic services (including genetic services received
pursuant to participation in clinical research) 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.
(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 (including obtaining, interpreting,
or assessing genetic information); or
(C) genetic education.
(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 an
analysis of proteins or metabolites that does not detect
genotypes, mutations, or chromosomal changes.

SEC. 202. EMPLOYER PRACTICES.

(a) Discrimination Based on Genetic Information.--It shall
be an unlawful employment practice for an employer--
(1) to fail or refuse to hire, or to discharge, any
employee, or otherwise to discriminate against any employee
with respect to the compensation, terms, conditions, or
privileges of employment of the employee, because of genetic
information with respect to the employee; or
(2) to limit, segregate, or classify the employees of the
employer in any way that would deprive or tend to deprive any
employee of employment opportunities or otherwise adversely
affect the status of the employee as an employee, because of
genetic information with respect to the employee.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer to request,
require, or purchase genetic information with respect to an
employee or a family member of the employee except--
(1) where an employer inadvertently requests or requires
family medical history of the employee or family member of
the employee;
(2) where--
(A) health or genetic services are offered by the employer,
including such services offered as part of a 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;
(5) where the information involved is to be used for
genetic monitoring of the biological effects of toxic
substances in the workplace, but only if--
(A) the employer provides written notice of the genetic
monitoring to the employee;
(B)(i) the employee provides prior, knowing, voluntary, and
written authorization; or
(ii) the genetic monitoring is required by Federal or State
law;
(C) the employee is informed of individual monitoring
results;
(D) the monitoring is in compliance with--
(i) any Federal genetic monitoring regulations, including
any such regulations that may be promulgated by the Secretary
of Labor pursuant to the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or the Atomic
Energy Act of 1954 (42 U.S.C. 2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a
State that is implementing genetic monitoring regulations
under the authority of the Occupational Safety and Health Act
of 1970 (29 U.S.C. 651 et seq.); and
(E) the employer, excluding any licensed health care
professional or board certified genetic counselor that is
involved in the genetic monitoring program, receives the
results of the monitoring only in aggregate terms that do not
disclose the identity of specific employees; or
(6) where the employer conducts DNA analysis for law
enforcement purposes as a forensic laboratory, includes such
analysis in the Combined DNA Index System pursuant to section
210304 of the Violent Crime Control and Law Enforcement Act
of 1994 (42 U.S.C. 14132), and requests or requires genetic
information of such employer's employees, but only to the
extent that such genetic information is used for analysis of
DNA identification markers for quality control to detect
sample contamination.

[[Page H4091]]

(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (6) of
subsection (b) applies, such information may not be used in
violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates section 206.

SEC. 203. EMPLOYMENT AGENCY PRACTICES.

(a) Discrimination Based on Genetic Information.--It shall
be an unlawful employment practice for an employment agency--
(1) to fail or refuse to refer for employment, or otherwise
to discriminate against, any individual because of genetic
information with respect to the individual;
(2) to limit, segregate, or classify individuals or fail or
refuse to refer for employment any individual in any way that
would deprive or tend to deprive any individual of employment
opportunities, or otherwise adversely affect the status of
the individual as an employee, because of genetic information
with respect to the individual; or
(3) to cause or attempt to cause an employer to
discriminate against an individual in violation of this
title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employment agency to
request, require, or purchase genetic information with
respect to an individual or a family member of the individual
except--
(1) where an employment agency inadvertently requests or
requires family medical history of the individual or family
member of the individual;
(2) where--
(A) health or genetic services are offered by the
employment agency, including such services offered as part of
a 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), (2), or (3) of subsection (a) or
treated or disclosed in a manner that violates section 206.

SEC. 204. LABOR ORGANIZATION PRACTICES.

(a) Discrimination Based on Genetic Information.--It shall
be an unlawful employment practice for a labor organization--
(1) to exclude or to expel from the membership of the
organization, or otherwise to discriminate against, any
member because of genetic information with respect to the
member;
(2) to limit, segregate, or classify the members of the
organization, or fail or refuse to refer for employment any
member, in any way that would deprive or tend to deprive any
member of employment opportunities, or otherwise adversely
affect the status of the member as an employee, because of
genetic information with respect to the member; or
(3) to cause or attempt to cause an employer to
discriminate against a member in violation of this title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for a labor organization to
request, require, or purchase genetic information with
respect to a member or a family member of the member except--
(1) where a labor organization inadvertently requests or
requires family medical history of the member or family
member of the member;
(2) where--
(A) health or genetic services are offered by the labor
organization, including such services offered as part of a
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), (2), or (3) of subsection (a) or
treated or disclosed in a manner that violates section 206.

SEC. 205. TRAINING PROGRAMS.

(a) Discrimination Based on Genetic Information.--It shall
be an unlawful employment practice for any employer, labor
organization, or joint labor-management committee controlling
apprenticeship or other training or retraining, including on-
the-job training programs--
(1) to discriminate against any individual because of
genetic information with respect to the individual in
admission to, or employment in, any program established to
provide apprenticeship or other training or retraining;
(2) to limit, segregate, or classify the applicants for or
participants in such apprenticeship or other training or
retraining, or fail or refuse to refer for employment any
individual, in any way that would deprive or tend to deprive
any individual of employment opportunities, or otherwise
adversely affect the status of the individual as an employee,
because of genetic information with respect to the
individual; or
(3) to cause or attempt to cause an employer to
discriminate against an applicant for or a participant in
such apprenticeship or other training or retraining in
violation of this title.
(b) Acquisition of Genetic Information.--It shall be an
unlawful employment practice for an employer, labor
organization, or joint labor-management committee described
in subsection (a) to request, require, or purchase genetic
information with respect to an individual or a family member
of the individual except--
(1) where the employer, labor organization, or joint labor-
management committee inadvertently requests or requires
family medical history of the individual or family member of
the individual;

[[Page H4092]]

(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; and
(D) any individually identifiable genetic information
provided under subparagraph (C) in connection with the
services provided under subparagraph (A) is only available
for purposes of such services and shall not be disclosed to
the employer, labor organization, or joint labor-management
committee except in aggregate terms that do not disclose the
identity of specific individuals;
(3) where the employer, labor organization, or joint 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;
(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; or
(6) where the employer conducts DNA analysis for law
enforcement purposes as a forensic laboratory, includes such
analysis in the Combined DNA Index System pursuant to section
210304 of the Violent Crime Control and Law Enforcement Act
of 1994 (42 U.S.C. 14132), and requests or requires genetic
information of such employer's apprentices or trainees, but
only to the extent that such genetic information is used for
analysis of DNA identification markers for quality control to
detect sample contamination.
(c) Preservation of Protections.--In the case of
information to which any of paragraphs (1) through (6) of
subsection (b) applies, such information may not be used in
violation of paragraph (1), (2), or (3) of subsection (a) or
treated or disclosed in a manner that violates section 206.

SEC. 206. CONFIDENTIALITY OF GENETIC INFORMATION.

(a) Treatment of Information as Part of Confidential
Medical Record.--If an employer, employment agency, labor
organization, or joint labor-management committee possesses
genetic information about an employee or member, such
information shall be maintained on separate forms and in
separate medical files and be treated as a confidential
medical record of the employee or member. An employer,
employment agency, labor organization, or joint labor-
management committee shall be considered to be in compliance
with the maintenance of information requirements of this
subsection with respect to genetic information subject to
this subsection that is maintained with and treated as a
confidential medical record under section 102(d)(3)(B) of the
Americans With Disabilities Act (42 U.S.C. 12112(d)(3)(B)).
(b) Limitation on Disclosure.--An employer, employment
agency, labor organization, or joint labor-management
committee shall not disclose genetic information concerning
an employee or member except--
(1) to the employee or member of a labor organization (or
family member if the family member is receiving the genetic
services) at the written request of the employee or member of
such organization;
(2) to an occupational or other health researcher if the
research is conducted in compliance with the regulations and
protections provided for under part 46 of title 45, Code of
Federal Regulations;
(3) in response to an order of a court, except that--
(A) the employer, employment agency, labor organization, or
joint labor-management committee may disclose only the
genetic information expressly authorized by such order; and
(B) if the court order was secured without the knowledge of
the employee or member to whom the information refers, the
employer, employment agency, labor organization, or joint
labor-management committee shall inform the employee or
member of the court order and any genetic information that
was disclosed pursuant to such order;
(4) to government officials who are investigating
compliance with this title if the information is relevant to
the investigation; 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.
(c) Relationship to HIPAA Regulations.--With respect to the
regulations promulgated by the Secretary of Health and Human
Services under part C of title XI of the Social Security Act
(42 U.S.C. 1320d et seq.) and section 264 of the Health
Insurance Portability and Accountability Act of 1996 (42
U.S.C. 1320d-2 note), this title does not prohibit a covered
entity under such regulations from any use or disclosure of
health information that is authorized for the covered entity
under such regulations. The previous sentence does not affect
the authority of such Secretary to modify such regulations.

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 of the United States (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 of the United States
(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 of the United States).
(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 of the United States (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 of the United States
(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 of the United
States).
(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 of the United States (42 U.S.C. 1988), shall
be powers, remedies, and procedures this title provides to
that Board, or any person, alleging such a practice.

[[Page H4093]]

(3) Damages.--The powers, remedies, and procedures provided
in section 1977A of the Revised Statutes of the United States
(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 of the United States).
(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 of the United States (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 of the United States
(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 of the United States).
(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 of the United States (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 of the United States
(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 of the United States).
(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 Labor of the House of
Representatives; and
(H) 1 member shall be appointed by the ranking minority
member of the Committee on Education and Labor 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.

(a) In General.--Nothing in this title shall be construed
to--
(1) limit the rights or protections of an individual under
any other Federal or State statute that provides equal or
greater protection to an individual than the rights or
protections provided for under this title, including the
protections of an individual under the Americans with
Disabilities Act of 1990 (42 U.S.C. 12101 et seq.) (including
coverage afforded to individuals under section 102 of such
Act (42 U.S.C. 12112)), or under the Rehabilitation Act of
1973 (29 U.S.C. 701 et seq.);
(2)(A) limit the rights or protections of an individual to
bring an action under this title against an employer,
employment agency, labor organization, or joint labor-
management committee for a violation of this title; or
(B) provide for enforcement of, or penalties for violation
of, any requirement or prohibition applicable to any
employer, employment agency, labor organization, or joint
labor-management committee the enforcement of which, or
penalties for which, are provided under the amendments made
by title I;
(3) apply to the Armed Forces Repository of Specimen
Samples for the Identification of Remains;
(4) limit or expand the protections, rights, or obligations
of employees or employers under applicable workers'
compensation laws;
(5) limit the authority of a Federal department or agency
to conduct or sponsor occupational or other health research
that is conducted in compliance with the regulations
contained in part 46 of title 45, Code of Federal Regulations
(or any corresponding or similar regulation or rule);
(6) limit the statutory or regulatory authority of the
Occupational Safety and Health Administration or the Mine
Safety and Health Administration to promulgate or enforce
workplace safety and health laws and regulations; or
(7) require any specific benefit for an employee or member
or a family member of an employee or member under any group
health plan or health insurance issuer offering group health
insurance coverage in connection with a group health plan.
(b) Genetic Information of a Fetus or Embryo.--Any
reference in this title to genetic information concerning an
individual or family member of an individual shall--
(1) with respect to such an individual or family member of
an individual who is a pregnant woman, include genetic
information of any fetus carried by such pregnant woman; and
(2) with respect to an individual or family member
utilizing an assisted reproductive technology, include
genetic information of any embryo legally held by the
individual or family member.

[[Page H4094]]

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 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 PROVISIONS

SEC. 301. GUARANTEE AGENCY COLLECTION RETENTION.

Clause (ii) of section 428(c)(6)(A) of the Higher Education
Act of 1965 (20 U.S.C. 1078(c)(6)(A)) is amended to read as
follows:
``(ii) an amount equal to 23 percent of such payments for
use in accordance with section 422B, except that beginning
October 1, 2007, and ending September 30, 2008, this
subparagraph shall be applied by substituting `22 percent'
for `23 percent'.''.

SEC. 302. 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.

The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
California (Mr. George Miller) and the gentlewoman from Illinois (Mrs.
Biggert) each will control 20 minutes.
The Chair recognizes the gentleman from California.

General Leave

Mr. GEORGE MILLER of California. Mr. Speaker, I request 5 legislative
days in which Members may insert material relevant to H.R. 493 in the
Record.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from California?
There was no objection.
Mr. GEORGE MILLER of California. Mr. Speaker, I yield myself 2
minutes.
(Mr. GEORGE MILLER of California asked and was given permission to
revise and extend his remarks.)
Mr. GEORGE MILLER of California. Mr. Speaker, I am pleased that the
House will take up H.R. 493, the Genetic Information Nondiscrimination
Act of 2007.
This legislation is sponsored by two of my distinguished colleagues,
Congresswoman Louise Slaughter, who has been waiting 10 years to debate
this bill on the floor of the House of Representatives, and
Congresswoman Judy Biggert, who has been a member of the committee
which I chair, the Committee on Education and Labor, and I commend the
sponsors for their hard work and for their perseverance.
This bill is long overdue. The Human Genome Project started the
revolution in science and medicine nearly 20 years ago by identifying
the specific chromosomes within the genes that make up the human body.
Once the scientists identified and understood these genetic building
blocks, they developed tests that identified genetic markers for
diseases that could, but may never, occur.
We understand that this scientific revolution can and will save
lives. It can save children from devastating illnesses, and once these
tests and treatments become more widely available, they will help us
live longer lives with less debilitating diseases.
The key to unlocking this scientific revolution is to assure
individuals of genetic privacy and nondiscrimination when they undergo
genetic testing and counseling. Many Americans already forgo testing
for fear of losing their jobs and their health insurance. In a 2003
National Institutes of Health study, 39 percent of the individuals
surveyed cited fear of losing their health insurance as the most
distressing issues related to genetic testing.

{time} 1345

There is a clear need for us to pass this law to protect genetic
information from discriminatory uses. We all suffer if fears of lost
jobs or health insurance stifle these scientific advances.
That is why 41 States have passed laws to prohibit discrimination in
the individual health insurance market.
Mr. Speaker, I reserve the balance of my time.
Mrs. BIGGERT. Mr. Speaker, I yield such time as he may consume to the
gentleman from Louisiana (Mr. Boustany), a member of the Education and
Labor Committee.
Mr. BOUSTANY. Mr. Speaker, I rise in support of this legislation, and
while I do not by any means think it is a perfect bill, I do believe it
contains a number of important improvements over prior versions of the
legislation. More importantly, it marks a commitment by this Congress
to ensure that the law of the United States protects American workers
and health care consumers from discrimination on the basis of their
genetic makeup. Because that goal is so critical, I will vote for this
bill today, and I urge my colleagues to do likewise.
I would like to commend my colleagues, and fellow member on the
Committee on Education and Labor, Representative Judy Biggert, and
Congresswoman Louise Slaughter for their tremendous work and years of
dedication on this important issue. Both of you have been persistent
and effective on so many issues that have come before this committee
and this Congress. Both should be commended for adding this important
bill to your list of legislative accomplishments.
As was noted during our committee's consideration of this bill, I
believe that the title of the legislation before us, the Genetic
Information Nondiscrimination Act, embodies a proposition that all
members of our committee and, indeed, all Members of this Congress
should endorse. Simply put, no employee should face discrimination on
the basis of genetic makeup or on any characteristic other than the
ability to do the job. Similarly, no employee should risk his or her
health insurance status simply because of the possibility that they may
someday develop an illness.
This bill was drafted with those fundamental principles in mind, and
I believe that through the legislative process we have taken steps
toward ensuring that the bill we pass fulfills those principles, while
minimizing the potential for unintended consequences.
I would like to point out a number of improvements in the bill that I
think merit attention.
I am pleased that the bill before us today embodies the same logic as
a past executive order issued by President Clinton to ensure that this
legislation would not inadvertently serve as a broad, new Federal
mandate requiring all insurance plans and employers to cover all
treatments related to genetic-related conditions. That is exactly the
type of unintended consequence we were seeking to avoid, and I am
pleased that we were able to work this out.
Second, I would like to highlight a provision in the legislation that
ensures that employers, who are currently subject to a number of
confidentiality and recordkeeping requirements under law, are not
burdened by yet another redundant set of paperwork requirements. The
bill before us today provides that with respect to genetic information,
if an employer maintains employee records and treats them as it does
confidential medical records under the Americans with Disabilities Act,
it is in compliance with this new genetics law.
Third, I applaud a significant improvement in the bill, and namely,
its extension of genetic nondiscrimination protection to all Americans.
One of the issues raised during our committee's consideration of the
bill was concern that the bill's protections did not adequately extend
to cover children in utero or at early stages of development or in
connection with in vitro fertilization and other technologies. I am
very pleased that the final bill before us addresses these issues to
the satisfaction of all Members on both sides of the aisle who have
worked in good faith to ensure the broadest protection possible.
The bill contains a number of other improvements over prior versions,
representing issues we were able to work through over the past couple
of months and which demonstrate how the committee process is truly
meant to work. We were presented with well-intentioned legislation,
heard meaningful testimony on it and its potential impact on employers
and employees

[[Page H4095]]

alike, raised and debated legitimate concerns, and worked together to
bridge the gap between where we began and where we stand today. I thank
the staff on both sides of the aisle for making this a reality.
I would be remiss if I did not point out concerns I have with the
bill and express my hope that as the legislative process continues, and
if and when the provisions of this bill are administered, we give due
weight to these concerns.
I remain concerned that the bill's penalty provisions are overbroad
and will potentially subject employers to punitive damages for simple
paperwork violations. I am equally concerned that the bill we pass
today will not set a single national standard, but still leave
employers subject to a patchwork of varying requirements on a State-by-
State basis. And finally, I think the bill would be significantly
improved if we made clear that employers would not be held liable for
the acquisition and use of genetic information where such use was
required or justified by business necessity.
As we send this bill to the United States Senate for consideration, I
would urge my colleagues in that body to take up and address these
issues. Beyond that, as courts and administrative agencies interpret
and enforce these laws, I would urge them to heed the intent of
Congress; namely, that this bill's most egregious penalties must be
reserved for the most egregious violations of the law, and that our
intent is not to ensnare employers acting in good faith in a legal web
of penalties and damages.
As I noted at the outset of my remarks, our actions today will ensure
that the law of the United States protects American workers and health
care consumers from discrimination on the basis of their genetic
makeup, a goal I think that is shared by every Member of this House. I
urge my colleagues to support this legislation.
Mr. GEORGE MILLER of California. Mr. Speaker, I yield 5\1/2\ minutes
to the gentlewoman from New York (Ms. Slaughter), the Chair of the
Rules Committee of the House, who has worked on this legislation for a
very long time, without whose persistence with this bill we would not
be here on the floor.
Ms. SLAUGHTER. Mr. Speaker, I thank the gentleman for yielding, and I
thank my partner, Mrs. Biggert, also for the hard work she has done. It
has taken us collectively 12 years to get to this point, and I want to
say at the outset we are not talking about some population of people
who might have bad genes. We are talking about us, because every one of
us has bad genes, between 30 and 40. So this protection goes not just
to some employee somewhere, but all of us and the people we love.
It is with great pride that I rise today. As a matter of fact, I
could not stop smiling all day. With the passage of this bill, we are
going to stand up for the future health of our citizens and one of
medicine's most promising fields, genetic research.
It is almost heartbreaking to me to think that we are 10 years behind
in genetic research and the people we could have helped up to now, but
it is the culmination of a bipartisan effort to prevent the improper
use of genetic information in the workforce and insurance decisions.
It is no longer simply the work of science fiction writers.
There have been many instances of genetic discrimination, from a
woman who was fired after a genetic test revealed her risk for lung
disorder, to a social worker who, despite outstanding performance
reviews, was dismissed because some member of her family had
Huntington's disease.
Consider the case of Heidi Williams, an individual diagnosed with
alpha-1 antitrypsin deficiency. In 2004, she testified that a large
health insurance company had denied coverage for her two children
because they were carriers for the disease.
GINA will make these discriminatory practices illegal by prohibiting
health insurers from denying coverage or charging higher premiums to a
healthy individual because of a genetic predisposition, which means you
may never get the disease, might happen.
GINA also bars employers from using genetic information for hiring,
firing, job placement or promotion decisions.
In the 12 years since I first introduced this legislation, the need
for it has grown rapidly. Scientific research has advanced so quickly
that we cannot possibly afford to wait any longer.
It offers immense potential for early treatment and prevention of
numerous diseases.
Since the sequencing of the human genome was completed in 2003,
researchers have identified genetic markers for a wide variety of
health conditions, and new progress is being made every day.
Fifteen percent of all cancers are found to have an inherited
susceptibility. Ten percent of adult chronic diseases, heart disease
and diabetes, America's top killers, have a genetic component.
Already, over 15,500 recognized genetic disorders affect 13 million
Americans, and each and every one of us, as I said before, and it is so
important for you to know this, each and every one of us is in that
category of carrying between 5 and 50 bad genes, or predicted genes.
They may not be so bad.
That is exactly why this bill is so important to all of us, not just
those with recognized disorders. There is not a single person on the
planet that has perfect genes. Every one of us, and let me make that
clear again, are all vulnerable to genetic discrimination.
To give you an idea of the potential that exists from this research,
consider that a genetic test can tell a woman with a family history of
breast cancer if she has the genetic mutation that can cause it, long
before the cancer might develop.
For these exciting scientific advances to continue, for the potential
of this technology to be realized, we have to make genetic testing
something commonplace rather than something that is feared and kept
secret.
But sadly, the threat of genetic discrimination and the fear of being
passed over for promotion, forced to pay more for health insurance, or
even denied coverage, men and women are much less likely to be tested
and to take advantage of that potentially lifesaving information.
Most importantly, if individuals do not participate in the clinical
trials, we will never be able to reap the great benefits of this
genetic technology.
In a 2006 Cogent Research poll, 66 percent of respondents said they
were concerned about how their genetic information would be stored and
who would have access to it.
I want to thank everybody, first Dr. Collins who sequenced the human
genome and testified before Congress at least 12 times, and I cannot
imagine anybody would be not be moved by his testimony. He is here with
us today.
I want to thank all the committee members, certainly Mrs. Biggert who
has worked so hard, and her staff; and the three committees who have
jurisdiction here who have done so much for us. Mr. Miller, the first
thing I think in January he told me this bill was coming to the floor.
I want to thank Congresswoman Eshoo for her untiring effort to help
bring this, and certainly the member of my staff who has worked so
hard.
It is a great day. You may not realize it but it also just turns out
to be DNA Day. What a wonderful way to celebrate it.
Seventy-two percent agreed that the government should establish laws
and regulations to protect the privacy of individuals' genetic
information. And 85 percent said that without amending current law,
employers would use this information to discriminate.
Before I close, I want to reiterate the broad support that this bill
enjoys. We have over 220 Democrat and Republican cosponsors behind this
bill.
In past Congresses, the Senate has passed this bill twice with
unanimous support. And I would like to thank the President who today
issued a statement of administration policy in support of the bill.
I want to take a moment to thank the lead Republican cosponsor of
this bill, Congresswoman Judy Biggert for her dedication to this bill,
along with Congresswoman Anna Eshoo for being a strong advocate for
this bill over the years.
I also want to thank Dr. Francis Collins for his support. His
testimonies over the years should have swayed even the firmest
unbelievers that genetics has the potential to change our health care
system as we know it.
Lastly, I want to thank the advocates from the health and science
community. Over 200 organizations including Hadassah support this bill.
GINA will do more than stamp out a new form of discrimination--it
will help our country be a leader in a field of scientific research
that

[[Page H4096]]

holds as much promise as any other in history.
And it will allow us to realize the tremendous potential of genetic
research without jeopardizing one of the most fundamental privacies
that can be imagined.
Mr. Speaker, today is a momentous day.
And, I urge all my colleagues to support this bill.
Mrs. BIGGERT. Mr. Speaker, I yield myself 3 minutes.
Obviously I rise in strong support of H.R. 493. I think it has been
an honor to work with the gentlewoman from New York (Ms. Slaughter)
and, I might add, work we did.
When the Human Genome Project was completed in 2003, the House of
Representatives recognized it as ``one of the most significant
scientific accomplishments of the past 100 years.''
For the first time, individuals actually could know their genetic
risk of developing disorders such as cancer, diabetes, heart disease,
Parkinson's, Alzheimer's, and they could take preventative measures to
decrease their risks. It spawned a personalized medicine movement,
focusing on catching diseases earlier, when they are cheaper and easier
to treat or, even better, preventing the onset of the disease in the
first place.
But after investing more than $3.7 billion in taxpayer money to
achieve this breakthrough, Congress walked away and left the job
unfinished.
We left people without any assurance that their genetic information
would not be used against them. So, understandably, they avoided this
great technology, never realizing the untold health benefits and
savings.
This concern even spilled over into NIH, where a fear of genetic
discrimination is currently the most commonly cited reason for not
participating in research on potentially lifesaving genetic testing for
breast cancer and colon cancer. Fully one-third of those eligible to
participate declined to do so for this reason, undermining the
development of new treatments and cures.
Mr. Speaker, today Congress is here to settle some unfinished
business and provide Americans the protections against genetic
discrimination in health care insurance and employment that they need
to utilize genetic testing without fear.
Besides the more than 200 health advocacy and business organizations
that support this bill, recent surveys show 93 percent of Americans
believe that employers and insurers should not be able to use genetic
information to discriminate.
With numbers like this, it should come as no surprise that this
legislation enjoys overwhelmingly bipartisan support. And I want to
take a moment to thank my good friend Ms. Slaughter, Mr. Walden and Ms.
Eshoo. It truly has been a pleasure working with all of them. I would
also like to thank Mr. McKeon, Mr. Miller and all the other chairmen
and ranking full committee and subcommittee members for working
together to make this a better bill.
I would be remiss if I did not mention the members of the Coalition
for Genetic Fairness, without whom this bill would not be possible.
Finally, I would like to thank Brian Petersen of my staff and
Michelle Adams of Ms. Slaughter's staff and all the outstanding staff
who worked tirelessly behind the scenes on our behalf and who have put
in long hours on this legislation.
Why must we pass this bill today? Because it dramatically reduces
health care costs while saving or extending human lives.

{time} 1400

Madam Speaker, I reserve the balance of my time.
Mr. GEORGE MILLER of California. Madam Speaker, I yield 2 minutes to
the gentleman from Michigan (Mr. Dingell), the chairman of the Energy
and Commerce Committee.
(Mr. DINGELL asked and was given permission to revise and extend his
remarks.)
Mr. DINGELL. I thank the gentleman for yielding to me. I applaud the
work of the three committees that have brought this legislation to us,
and the work of my good friend from California (Mr. George Miller) as
well as that of the distinguished gentleman from New Jersey (Mr.
Andrews). I want to say a word of praise for our colleagues from Ways
and Means led by their distinguished chairman, Mr. Rangel.
On our committee, a lot of people worked on it very hard: Mr.
Pallone, the chairman of our subcommittee; Ms. Eshoo, who worked very
hard on the matter; and our good friend Mr. Stupak and the
distinguished gentlewoman from Colorado, who now occupies the Chair,
Ms. DeGette, who both did a superb job in negotiating language to avoid
the difficult questions associated with birth and issues relating to
abortion.
I want to say a word of praise for the distinguished gentlewoman from
New York (Ms. Slaughter) who did so much.
Madam Speaker, this is an extraordinary bill. It prevents individuals
from employment discrimination. It would make it unlawful for
employers, employment agencies, labor organizations or training
programs to deny individuals the employment opportunities because of
genetic information. It requires genetic information to be treated as a
part of the individual's confidential medical record. In addition to
that, it protects individuals from insurance discrimination by
prohibiting insurers both in the group and individual markets from
using genetic information to determine eligibility to establish
individual premiums based on genetic information of individuals or
their family members.
The bill has been significantly amended since its introduction and
has been refined through the work of the three able committees of
jurisdiction. The version before us includes key elements that were
reported by the Committee on Energy and Commerce, and includes a useful
definition change of the word ``family member.'' It is a fine piece of
legislation.
I want to pay a tribute to my friend, Mr. Barton, the ranking member
of the committee on Energy and Commerce, for his cooperation on this
matter. This is an excellent bill. It should pass, it should become
law. My private guess, my dear friends, is that it will exceed, in
terms of votes, 350 or 400.
I also want to express my respect and affection for the gentlewoman
from California (Mrs. Capps), who worked hard on this bill.
Mrs. BIGGERT. Madam Speaker, I yield 3\1/2\ minutes to the gentleman
from Florida (Mr. Stearns).
(Mr. STEARNS asked and was given permission to revise and extend his
remarks.)
Mr. STEARNS. Let me also congratulate the authors of the bill and the
fine work that they have done. We have had a hearing in Energy and
Commerce, where I serve, but I thought I would just follow up a little
bit on what the gentleman from Louisiana talked about, a little bit
about the preemption.
Madam Speaker, I think almost everybody in this House is for genetic
protection from genetic discrimination. There have been many bills over
the years that Ms. Slaughter has worked on. I think she indicated she
has worked on it for 12 years. I compliment her on her perseverance.
Sometimes it takes that kind of conscientiousness to get anything
accomplished here. The fact we are able to get this today is a success
story. In fact, the President has indicated, I think nationally, that
he would like to sign this bill. So it is on a fast track, and I am
sure that we won't have any trouble in the suspension passing it.
But one significant concern that I bring to the attention of my
colleagues is a Federal preemption. I mention this as perhaps, as the
Senate and the House come together, they can solve this problem. So I
will continue to talk about it.
According to CBO, the bill would ``preempt some State laws that
establish confidentiality standards for genetic information, and would
restrict how State and local governments use such information in
employment practices and in the provision of health care to
employees.'' This bill will create, I think, a little bit of a problem,
the confusion in about the 42 States that currently have laws
prohibiting discrimination based upon genetic information.
For example, my home State of Florida is very strong with clear
definitions. If we superimpose this bill, it would create a lot of
confusion, I think, in my State of Florida. Many exemptions occur, HIV
testing, drug

[[Page H4097]]

testing, forensic analysis, routine blood tests for current health
would be negated. Even more frustrating for the regulated, the
operative Federal-State relationship rule is whatever part of a State
law is more stringent survives. The question is, who decides when that
occurs? The courts? I think that is a question the Senate should look
at.
There are better approaches, but partial preemption is what we see
here. I think it should be changed. Maybe the answer is across-the-
board preemption, and that is what I am recommending, or maybe allow
States to apply for an exemption. I believe Florida and other States
are substantially meeting this policy.
In any event, some Federal agency should at least adjudicate so that
the regulated community is not subject to uncertainty, fines,
ultimately litigation. So I asked this same question when we had the
markup in Energy and Commerce.
So I asked during our Energy markup on March 23 about this to the
staff. At that time, it was difficult to understand what their answer
was. I followed up on March 27 with a letter to Chairman Dingell,
signed along with a Health Subcommittee ranking member Nathan Deal. We
have not at this point received a reply to this letter, and I just urge
that somehow in the conference on this bill that we try to answer that
question.
Finally, 11 Energy and Commerce Republicans signed our views to the
energy report, which, Madam Speaker, I make part of the Record, and I
support the intention of this legislation. It's good. I congratulate
everybody, but I would like to see a preemption and other clear issues
worked out in conference.
I support protection from genetic discrimination, so much so I have
offered my own bills in prior Congresses. However, this bill has, some
problems I would like resolved.
(For the record: Many people have been remarking that we have been
working for over a dozen years on legislation to safeguard individuals
from discrimination against due to their genetic profile when they seek
to purchase health insurance or employment.
Well, I count myself among those waiting. For, in 1995, I was proud
to be named the first Chair of the Congressional Task Force on Medical
Records and Genetics, by then Commerce Committee Chairman Bliley.
Congressman Gene Green (Committee Democrat) was my Co-chair, and
together we held many meetings and hearings with witnesses from the
genetics community, including insurance companies, the biotech and
pharmaceutical industries, and patient advocates. Indeed, one of my
proudest legislative achievements came in the Health Insurance
Portability and Accountability Act of 1996 (HIPAA). In the Commerce
Committee markup of HIPAA, I was successful in adding two words to the
list of protections: ``genetic information.'' It survived and is in the
HIPAA law today.
And, I have continued my engagement, authoring bills in the last
several Congresses to prohibit genetic nondiscrimination in health
insurance.)
One significant concern is the lack of clarity over federal pre-
emption. According to CBO, the bill would ``preempt some state laws
that establish confidentiality standards for generic information, and
would restrict how state and local governments use such information in
employment practices and in the provision of health care to
employees.'' GINA will create confusion for the 43 states that
currently have laws prohibiting discrimination based on genetic
information.
Florida's law, for example, is very strong, with clear definitions.
If we superimpose GINA it will create a lot of confusion. Many
exemptions--HIV testing, drug testing, forensic analysis, routine blood
tests for current health--would be negated. Even more frustrating for
the regulated, the operative Federal-state relationship rule is
whatever part of a state law is more stringent survives. And who will
decide? The courts.
There are better approaches, but partial preemption is
unsatisfactory. Maybe the answer is across the board preemption. Or,
maybe allow states to apply for an exemption. I believe Florida and
other States are substantially meeting the policy. In any event, some
Federal agency should at least adjudicate so that the regulated
community is not subject to uncertainty, fines, or litigation.

I asked this in the Energy and Commerce markup March 23. And, I
followed up on March 27 with a letter to Chairman Dingell, signed along
with Health Subcommittee Ranking Member Nathan Deal--a response to
which has not arrived. Finally, eleven Energy & Commerce Republicans
signed Additional Views to our Committee Report, which I resubmit for
the Record.
Again, I support the intention of this legislation, but would like to
see pre-emption and other unclear issues worked out in conference.

Gina Will Create Confusion for the 43 States That Currently Have Laws
Prohibiting Discrimination Based on Genetic Information

We have not done a complete survey but understand that 43
States already have programs and definitions. We would then
want to ask Members if they find the programs in their state
inadequate. If you were to superimpose the GINA requirements
on those states it will involve a lot of confusion. Many
exemptions and clear statements regarding HIV testing, drug
testing, and other issues would appear to be wiped out. Even
more frustrating for the regulatory community the operative
Federal-state relationship rule is whatever part of a state
law is more stringent survives. This means pieces of state
law will apply while other pieces will be preempted. This
would all have to be sorted out by the courts. We think there
are better approaches. The worst approach is this partial
preemption approach. For some programs there is across the
board preemption. In other cases, a state is allowed to
submit its program for evaluation as a whole. If such
programs are adequate or substantially promoting the policy,
they would stay intact. We believe our States are
substantially meeting the policy and do not see the need for
disruption. In any event, some Federal agency should at least
sort out what law applies in advance so that the regulated
community is not held hostage to more lawyers and
uncertainty. Joe Barton. Nathan Deal. Michael Burgess. Steve
Buyer. Barbara Cubin. Mike Rogers. John Shadegg. Cliff
Stearns. Lee Terry. Heather Wilson. Tim Murphy.

Mr. GEORGE MILLER of California. Madam Speaker, I yield 2\1/2\
minutes to the gentlewoman from California (Ms. Eshoo) who, again, has
worked so hard to bring this legislation to the floor and helped to
resolve some of the differences that have existed between the
committees, and I thank her for her work.
Ms. ESHOO. I thank the distinguished chairman of the Education
Committee.
Madam Speaker, today is a very exciting day. I don't think there is
any feeling that beats coming to the floor and knowing that success
awaits us and the American people. I think that's the case today as we
gather to support the Genetic Information Nondiscrimination Act, known
as GINA.
Many times over the course of American history in this Chamber,
discrimination has been struck down. I believe that is what we are
doing here today with this bill. When the sequencing of the Human
Genome Project was completed in April of 2003, it was a great, great
victory in the scientific community. So many of us understood what the
implications were for our constituents, for the people of our Nation,
and people in the world.
Researchers identified genetic markers for a variety of chronic
health conditions. When they did, they threw open the doors to increase
the potential for early treatment and prevention of numerous diseases.
But there was something that stepped in the way, and that was the
threat of discrimination against anyone that subjected themselves to
the test, found that they had a gene that wasn't perfect, which I think
is the potential of every single one of us, and as a result of that,
that their job would be threatened, and that their health care
insurance could be dropped. What this bill does today is to throw the
doors open with a guarantee by making it illegal for health plans and
health insurers to deny coverage to a healthy individual or charge a
higher premium based solely on genetic predisposition to a specific
disease.
I could go on and on about the bill, but the fact of the matter is,
it has well over 200 cosponsors. It is a real bipartisan bill. Thank
you to Congresswoman Louise Slaughter for her tenacity and her belief
in the effort. Twelve years, that is a long time.
I would also like to say what a difference a new majority makes,
because this bill was really blocked from coming to the floor for full
consideration. To Representative Biggert, she has been just as
tenacious as Louise Slaughter, to all of my colleagues that have worked
on this, to the chairman, Mr. George Miller of California, Mr. Dingell,
Mr. Rangel, for making sure that they saw this through and, Ms.
Slaughter, of course, she slaughtered us all, I tell you, on this, she
made sure, and to the inspirational Dr. Francis Collins, who testified
over and over again what the possibilities were that awaited the
American people.

[[Page H4098]]

I pay tribute to all of you. It's a great day here in the House of
Representatives.
Mrs. BIGGERT. Madam Speaker, may I inquire how much time remains on
both sides?
The SPEAKER pro tempore (Ms. DeGette). The gentlelady from Illinois
has 8 minutes remaining. The gentleman from California has 9 minutes
remaining.
Mrs. BIGGERT. Madam Speaker, I yield 2 minutes to a member of the
Energy and Commerce Committee, Dr. Burgess.
Mr. BURGESS. Madam Speaker, it's my feeling that this bill should
have been brought to the floor under a rule to perhaps allow additional
improvement and amendment, as pointed out by Mr. Stearns. There is the
opportunity, perhaps in conference, to further improve the bill. I
don't think our work is quite done.
One improvement that I was able to effect in our committee, the
Committee on Energy and Commerce, is the exclusion of title II for
covered entities already subject to regulation under HIPAA statutes,
the Health Insurance Portability and Accountability Act statutes. Dual
regulation of communications, uses, disclosures and other aspects and
activities, subject to regulation, currently regulated by the
Department of Health and Human Services, by GINA, would have had
disastrous consequences for coordination of care.
We need to make clear that providing health services is not the same
as hiring, firing or job promotion. Genetic information is medical
information and is not restricted under the House bill for employer-
sponsored services that are covered in entities under HIPAA. Also,
nothing in this bill affects the practice of medicine. That is not the
intention, and this is among the principles that I have sought to
ensure.
I would note that the current HIPAA regulations are extremely
sophisticated. They are the result of over 5,000 communications and
comments. We are not going to trump those regulations under title II,
and that will prevent the possibility for enormous disruption and
adverse consequences.
Failure to address this issue would have been calamitous, for efforts
of using health information, new efforts for using health information
technology. Medical information systems cannot be burdened with legal
requirements that would, in effect, force complicated segregation of
genetic information from other medical information and health care,
including those in employer-sponsored clinics.
Still, with all of those caveats, I will be voting in favor of the
bill today. I do look forward to making certain that these
modifications survive in conference and perhaps there will be the
opportunity to even make things a little bit better in that process.
Mr. GEORGE MILLER of California. Madam Speaker, I yield 2 minutes to
the gentleman from New Jersey (Mr. Andrews).
(Mr. ANDREWS asked and was given permission to revise and extend his
remarks.)
Mr. ANDREWS. I thank my friend for yielding. I congratulate Chairman
Miller and Mr. Rangel and Mr. Dingell for their work, and especially my
friend, Congresswoman Slaughter, and Congresswoman Biggert for her
great work. I think we should reflect on the great work they are
achieving on this bill.
Madam Speaker, if your grandmother had breast cancer, you shouldn't
be denied a job or a promotion. That's what this bill says. If your dad
is a diabetic, you shouldn't have to pay higher health insurance
premiums. That's what this bill says.
When the scientific community comes to you and asks you to
participate in a genetic study that may hold the key to unlocking the
mystery of AIDS or Alzheimer's or leukemia, you should be able to
participate fully and freely without fear that your genetic information
will be unlawfully and improperly shared with someone who wants to do
the wrong thing with it.

{time} 1415

This is a significant achievement, not only in protecting the working
men and women of America from discrimination, but in empowering
American scientists to achieve the maximum that we can from the promise
of genetic medicine.
The bipartisan effort to support this bill will be vindicated year
after year and case after case as Americans can work freely, can avoid
discrimination, and as scientists can take the next step and the next
step and the next step to unlock the keys to genetic medicine.
So I congratulate my friends, Madam Speaker, for their great work on
this bill. I enthusiastically support it. I ask everyone to vote
``yes.''
I would like to note that the final version of H.R. 493 represents
the input and compromises made by 3 committees of jurisdiction.
In particular, I would like to mention 3 critical compromises
reflected in the final bill:
(1) the bill does not affect or limit the ability of health plans to
provide information to their members about the availability and
benefits of genetic tests,
(2) the bill is intended to supplement the protections afforded under
HIPAA and not intended to prohibit practices permitted under HIPAA
unless explicitly stated, and
(3) the bill is intended to provide 2 comparable but distinct causes
of action for violations of the Act with respect to genetic
information. Health plans and insurers generally are subject to the
requirements of the title 1. Employers, including to the extent
employers control or direct health benefit plans, are subject to the
requirements of title II of the bill.
I commend my colleagues on all 3 committees for their hard work to
enable us to pass this important genetic information protection bill.
Mrs. BIGGERT. Madam Speaker, I yield myself 1 minute.
Madam Speaker, I think that by incorporating genetic testing, we can
significantly reduce the cost of chronic disease, which currently
accounts for 70 cents of every health care dollar. I think the
President of the United States understands this, and I will include for
the Record the statement of administrative policy from the White House
in favor of this legislation.
Executive Office of the President, Office of Management
and Budget,
Washington, DC, April 25, 2007.

Statement of Administration Policy

H.R. 493--Genetic Information Nondiscrimination Act of 2007 (Rep.
Slaughter (D) NY and 224 cosponsors)

The Administration favors enactment of legislation to
prohibit the improper use of genetic information in health
insurance and employment. The Administration supports House
passage of H.R. 493, which would prohibit group health plans
and health insurers from denying coverage to a healthy
individual or charging that person higher premiums based
solely on a genetic prediposition to developing a disease in
the future. The legislation also would bar employers from
using individuals' genetic information when making hiring,
firing, job placement, or promotion decisions. The
Administration appreciates that the House bill clarifies that
the bill's protections cover unborn children.
The mapping of the human genome has led to more information
about diseases and a better understanding of our genetic
code. Scientists are pursuing new diagnostics, treatments,
and cures based on this information, but the potential misuse
of this information raises serious moral and legal issues.
Concern about unwarranted use of genetic information
threatens the utilization of existing genetic tests as well
as the ability to conduct further research. The
Administration wants to work with Congress to further perfect
this legislation and to make genetic discrimination illegal
and provide individuals with fair, reasonable protections
against improper use of their genetic information.

Madam Speaker, I reserve the balance of my time.
Mr. GEORGE MILLER of California. Madam Speaker, I yield 2 minutes to
the gentleman from New Jersey (Mr. Pallone).
Mr. PALLONE. Madam Speaker, I thank the chairman for yielding.
Madam Speaker, I rise in strong support of H.R. 493, of which I am a
cosponsor. As science continues to make rapid advancement in the area
of genetics, I cannot stress how important this bill is to every
American citizen.
Genetic testing has increasingly become an integral part of the
American health care system, providing the possibility to develop
better therapies that are more effective against disease and allow
individuals to take steps to reduce the likelihood that they will
contract a particular disorder. However, as knowledge of the human
genome expands, a greater proportion of the population will likely be
identified as carriers of mutations associated with a greater risk of
certain diseases, indicating that virtually all people are potentially
victims of genetic discrimination in health insurance.

[[Page H4099]]

Along with the increasing prevalence of genetic testing comes the
growing fear of the potential misuse of this information by way of
discrimination in health insurance and employment. Accordingly, we need
to strengthen current laws at both the Federal and State level in order
to protect against the possibility of genetic discrimination. This bill
will go a long way in making sure that this highly private information
cannot be misused or abused.
In closing, I want to thank the primary sponsors of this legislation,
particularly Ms. Slaughter, I know how long she has worked on this,
along with Ms. Eshoo and others. We finally came together in a
bipartisan fashion to bring up what I think is a bipartisan bill. They
should all be commended, all of us should be commended for our efforts.
I think that this could serve as a model for bipartisan cooperation on
other bills.
Mrs. BIGGERT. Madam Speaker, I reserve the balance of my time.
Mr. GEORGE MILLER of California. Madam Speaker, I yield 2 minutes to
the gentleman from Michigan (Mr. Stupak), a member of the Energy and
Commerce Committee.
Mr. STUPAK. Madam Speaker, I thank the gentleman for yielding.
Madam Speaker, I rise in support of H.R. 493, the Genetic Information
Nondiscrimination Act, or GINA. Congratulations to all who have worked
for the last number of years on this legislation, especially Ms.
Slaughter.
In reviewing this bill, I was concerned that families may face
genetic information discrimination from testing of embryos and fetuses,
plus I was concerned about children who are in the process of being
adopted. As genetic testing becomes increasingly common, GINA
protections must be extended to genetic material gathered through pre-
implementation genetic diagnoses, amniocentesis or other future
techniques.
Together with Chairman Dingell, Ms. DeGette and Mr. Smith, we were
able to close this loophole, which could have been exploited against
families on the basis of genetic material of their fetuses or children
in the process of being adopted.
I am proud to have worked with so many Members to correct the
concerns I had on this bill. I support the passage of this bill.
Mr. GEORGE MILLER of California. Madam Speaker, I yield 2 minutes to
the gentlewoman from California (Mrs. Capps), a member of the
committee.
Mrs. CAPPS. Madam Speaker, I thank my California colleague for
yielding me time.
Madam Speaker, I also rise in strong support of H.R. 493, and I
commend my colleagues, the Congresswomen who have been acknowledged,
Slaughter, Eshoo, Biggert and others who persisted over the years to
bring this legislation to the floor, and acknowledge that the Caucus
for Women's Studies of the 110th Congress has made the passage of this
its highest priority.
I am also struck by the importance of the partnership that is
highlighted with this legislation, a partnership between this
legislative body and our colleagues in the National Institutes of
Health and work that we should be doing together on behalf of the
American people.
As Dr. Francis Collins and his wonderful staff of the Genome Project
have taught us, the identification of genetic markers for disease is
one of the most remarkable accomplishments scientists have ever made.
Being able to identify risks for certain conditions holds such great
promise for our ability to identify and practice greater preventive
health care in this country. The importance of preventive care to our
well-being and our optimum health can never be overemphasized.
However, as with almost all great scientific advancements, we have
also opened the door to a whole slew of unintended consequences.
Preventive health care can be put at risk if patients decline genetic
testing for fear of insurance or employment discrimination. We need to
work together, and we will, on ways to promote ethical genetic testing,
coupled with appropriate privacy protections and with measures such as
we are doing today to prevent discrimination.
This bill accomplishes these goals, and I am extremely proud to
support it. I urge all of my colleagues to vote ``yes'' on its passage
Mrs. BIGGERT. Madam Speaker, I have no further speakers, so I will
yield myself the balance of my time to close.
Madam Speaker, this bill has been a bipartisan bill. It has got 95
Republicans and 125 Democrats. GINA passed the Education and Labor
Committee, Energy and Commerce Committee and the Ways and Means
Committee by voice vote. I think that GINA is needed to maintain high-
quality genetic research and clinical trials at NIH. It passed the
Senate last year 98-0, and the last Congress was a strong SAP for them,
so when this goes to conference we will see what happens this year.
Let me just say that Newt Gingrich said to not have this bill is to
cripple our ability to save lives. I would like to enter into the
Record a statement of his in the Washington Times, and just to quote a
little bit from it.
``Without protection from genetic discrimination, we risk missing out
on the promise of personalized medicine. But if we apply time-honored
principles of fairness and justice to the genome era, we can grant the
American public the gift of better informed patients, better equipped
providers, an enhanced biotech industry, improved health and lives
saved.
``Let's not withhold this gift any longer. Let's empower all
Americans to embrace the possibilities of personalized medicine for
better health, and let's commend the forward-thinking bipartisanship of
the 110th Congress that has brought us to the threshold of a world
where Americans can embrace personalized medicine without fear.
``Our health, and that of our children and grandchildren, depends on
it.''
Let me just say that this bill had to go through three committees,
and that is not easy, Education and Labor, Ways and Means and the
Energy and Commerce. That is no small feat. I really thank Chairman
Slaughter for all that she did to make sure that this went through, and
all the time she has spent on this. It has been a great honor to work
with her.
Again, let me thank the chairmen of these committees and the ranking
members for the time that they put in, and all the Members that came
down to speak today and all the Members that supported this as
cosponsors.
To go through the three committees, everybody knows something about
this place, but everybody wants to put their stamp on it. To come out
with a bill we can all agree on, and, as people said, they have some
things they would still like to put in, but I think being able to
manage all of the different committees, and what was their jurisdiction
and what maybe they thought was their jurisdiction but really was the
jurisdiction of another committee, makes it a very interesting process.
And I think we all learned about how this type of bill works. It is a
very technical bill, and that is why we thank all of the 200 groups, at
least 200 groups that have worked on this bill and been able to give us
the technical information that we needed to make this something that is
going to save lives. It is going to lower costs and it also is going to
find the cures for so many of these diseases and disorders, because
people will be willing to go into clinical trials. So I congratulate
all of the people that participated.
Madam Speaker, I include the article by Newt Gingrich for the Record

Congress of the United States,

Washington, DC.
Why does Newt Gingrich Support GINA?
Dear Republican Colleague, We wanted to draw your attention
to this op-ed by Newt Gingrich supporting H.R. 493, the
Genetic Information Nondiscrimination Act. It appeared in the
Washington Times on April 11, 2007. We urge you to vote
``yes'' when this legislation comes to the floor.
Sincerely,
Judy Biggert,
Member of Congress.
____

Greg Walden,
Member of Congress.

[From the Washington Times]

Health care re-gifting Legislation rightly avoids genetic
discrimination

(By Newt Gingrich and Robert Egge)

Protecting every American from genetic discrimination is a
long overdue gift to the nation. After 12 years of debate,
Congress is at last poised to deliver this gift.
The sequencing of the human genome is leading to
revolutionary advances in our understanding of the causes of
disease. Four years after completing the Human Genome
Project, we are witnessing the dawn of the era of
personalized medicine.
The discovery of genetic variants that contribute to risk
of common diseases will continue to grow rapidly during the
next few years, offering better opportunities for
individualized, preventive medicine. Already,

[[Page H4100]]

health-care providers can test for DNA patterns that
predispose some of us to cancer, and soon this will be
possible for diabetes, heart disease and other common
diseases. Doctors will also soon be able to prescribe
medicines and treatments based on our own individual
genetics. Pharmacogenomics will better equip doctors to give
the right medicine to the right patient at the right dose
and, by avoiding giving treatments to patients who would
suffer a negative reaction, save both lives and money.
The arrival of this new era, however, is being delayed by
widespread public fear of genetic discrimination. Individuals
worry that genetic predisposition to a particular disease
will deny them access to health care of employment. These
fears are not unwarranted. This issue affects all of us;
there are no perfect specimens at the DNA level. Each of us
carries gene variants that increase risk of developing one
disease or another, each of us is at risk for genetic
discrimination.
A recent independent survey conducted by the Genetics and
Public Policy Center showed that more than 90 percent of
Americans support the use of genetic testing by doctors to
identify a person's risk for future disease. But nearly all
Americans (93 percent) believe that health insurers should
not be able to use genetic test results about increased risk
of future disease to deny or limit insurance or charge higher
prices. Similarly, 93 percent felt that employers should not
be able to use genetic information to make hiring or
promotion decisions.
Not only do these fears discourage Americans from using
genetic tests that could personally benefit them, but they
risk delaying the arrival of new medical breakthroughs. At
the National Institutes of Health, fear of genetic
discrimination is the most commonly cited reason for
declining to participate in research that includes
potentially lifesaving genetic tests for cancer; over one-
third of eligible participants decline on this basis.
In the past, lawmakers have come close to providing
Americans the protections they seek. Two years ago, with the
support of the Bush administration, the Senate passed the
Genetic Information Nondiscrimination Act of 2005 by a 98-0
vote. Progress in the House was slower. Despite 244
cosponsors, including 117 Republicans, the bill never came to
a House vote in the 109th Congress.
In this Congress, the 110th, House and the Senate champions
have taken up genetic nondiscrimination with even greater
determination. All the House and Senate committees involved
have already held hearings on the bill, and the leadership
has signaled a commitment to moving S 358 and HR 493 to a
vote. President Bush has strongly restated his support. The
time is right to put the needed protections in place.
Without protection from genetic discrimination, we risk
missing out on the promise of personalized medicine. But if
we apply time-honored principles of fairness and justice to
the genome era, we can grant the American public the gift of
better-informed patients, better-equipped providers, an
enhanced biotech industry, improved health and lives saved.
Let's not withhold the gift any longer. Let's empower all
Americans to embrace the possibilities of personalized
medicine for better health. And let's commend the forward-
thinking bipartisanship of the 110th Congress that has
brought us to the threshold of a world where Americans can
embrace personalized medicine without fear.
Our health, and that of our children and grandchildren,
depends on it.

Madam Speaker, I yield back the balance of my time.
Mr. GEORGE MILLER of California. Madam Speaker, I yield myself the
balance of my time.
Madam Speaker, I would just want to join in thanking all of the
Chairs and the ranking members of the three committees and the
subcommittees, and clearly Louise Slaughter, our colleague from New
York, who has worked so hard on this legislation so very long, and Judy
Biggert also, and Anna Eshoo.
Given the importance of this legislation, it is hard to believe it
has been stuck in the Congress of the United States for 10 years, but
it has been. Maybe our reporting it today off of the floor is a tribute
to a fresh start.
This is a very, very important piece of legislation to the health of
the Nation and to the world. The advocacy of Louise Slaughter has
reminded us almost every day in those 10 years what we were missing by
not passing this legislation and making it available so that we could
get on with the wonderful discovery and the wonderful help that could
be provided to individuals, to their families and to our communities.
And the National Institutes of Health is to be commended, with all of
the assistance they provided and all of the information provided to
this Congress.
With that, I also want to thank the staffs of the three committees on
both sides of the aisle for all of their work. They put in a lot of
hours to get this resolved so that we could come to the floor and work
over the differences that were there sometimes between the committees.
Mr. GENE GREEN of Texas. Madam Speaker, I rise in support of H.R.
493, the Genetic Information Non-Discrimination Act.
The sequencing of the human genome was an amazing scientific
advancement, and has contributed to the rise of genetic testing to
inform patients of their proclivity for disease. Thanks to genetic
testing, individuals with a risk of an illness can take precautionary
steps ahead of time to ward off disease, which will contribute to lower
health care costs over time.
As we take advantage of this scientific progress, however, it is
critical that we protect individuals from any discrimination that could
result from the information these tests reveal. The results should not
be used by health insurers to deny anyone coverage or increase their
premiums because of a pre-disposition to a certain disease. Likewise,
the results should not be used by employers to discriminate against
employees based on their predisposition to disease.
I am proud to be a co-sponsor of this legislation, which our
colleagues Ms. Slaughter and Mrs. Biggert have been working on for over
a decade now. The health care marketplace has changed significantly
since the bill's original introduction, and important changes were made
to the bill during the 108th Congress to refine the bill's definitions
and scope.
During the Energy and Commerce Committee's consideration of the bill,
we learned about one segment of the health care marketplace that was
excluded from the bill's protections--the long-term care insurance
market. The bill sponsors and supporters all agreed that this bill was
never intended to regulate the long-term care insurance market, and I
understand that current statute treats long-term care insurance
differently.
Regardless of the bill's original intent, the fact remains that the
long-term care exclusion in this bill would allow a long-term care
insurer to discriminate against an individual on the basis of genetic
information. If an individual determines that she is at high-risk for
developing Alzheimer's disease, the next obvious step is to plan her
future care for Alzheimer's, including the purchase of long-term care
insurance. Despite all of the good intentions in this legislation, the
bill would allow long-term care insurance underwriters to refuse to
cover her or charge her higher premiums for a disease she has yet to
develop and may never develop.
As a Congress that continues to encourage Americans to plan for their
future, we should ensure that future legislation extends the patient
protections inherent in this bill to consumers who want to plan for
their future and purchase long-term care. With that, Madam Speaker, I
am pleased to support this important legislation and encourage my
colleagues to vote for its passage.
Mr. PAUL. Madam Speaker, the supporters of H.R. 493, the Genetic
Information Nondiscrimination Act, are right to be concerned over the
possibility that third parties, such as the government or potential
employers, will access an individual's genetic information without
consent, and use that information to deny an individual health
insurance or other benefits. I have long advocated repealing government
laws and polices that allow third parties to access personal
information. For example, I have worked to repeal the provision of
Federal law giving the Federal Government the power to assign every
American a ``unique medical health identifier.'' I also support
repealing the phony ``medical privacy'' regulations that give law
enforcement officials and state-favored private interests the right to
access medical records at will.
Because of the Federal Government's poor record in protecting
privacy, I do not believe the best way to address concerns about the
misuse of genetic information is through intrusive Federal legislation.
Uniform Federal mandates are a clumsy and ineffective way to deal with
problems such as employers making hiring decisions on the basis of a
potential employee's genetic profile. Imposing Federal mandates on
private businesses merely raises the costs of doing business and thus
reduces the employment opportunities for all citizens. A much better
way to eliminate irrational discrimination is to rely on state and
local regulation. Unlike the Federal Government, states and localities
are able to tailor their regulations to fit the needs of their
particular populaces. I would remind my colleagues that 34 states
currently ban genetic discrimination in employment, while 46 states
forbid health insurers from engaging in genetic discrimination.
Clearly, the states are capable of addressing this issue without
interference from Washington. My colleagues should also remember that
Congress has no constitutional authority to forbid private sector
employers from making hiring or other employment decisions on the basis
of genetic information.
The best way to address the sponsors of H.R. 493's legitimate
concerns is to put individuals back in control of the health care
dollar. When individuals control the health care dollar they, not their
employers, insurance

[[Page H4101]]

companies or Health Maintenance Organizations, can make all health care
decisions, including whether or not to share individual genetic
histories with a potential employer, insurer, or other third party.
Therefore, instead of creating more Federal regulations and
bureaucracies, my colleagues should increase individual control of
health care by passing legislation expanding Health Savings Accounts
and individual health care tax credits and deductions.
Mr. HOLT. Madam Speaker, I rise today in strong support of H.R. 493,
the Genetic Non-Discrimination Act (GINA). As a cosponsor of this
important legislation since I first came to Congress, I am delighted
that it is finally being considered by the House of Representatives.
As humans, we have a genetic destiny that we cannot control. The
genes we are born with are the genes we will die with, and it is wrong
for any employer to fire, refuse to hire, or deny insurance to an
employee based on that individual's genetic composition. It is
unconscionable for employers to require their employees to submit to a
genetic test or to secretly obtain genetic information, only to use the
genetic information against the employees.
The Human Genome Project was created to provide a genetic map of the
human body to aid the scientific and medical communities in their fight
against some of the most insidious diseases and afflictions suffered by
humanity. It is a great irony and a tragedy that this research is now
being used as justification to fire or refuse to hire employees who
have no control over their genetic destinies.
As a member of the Education and Labor Committee, I participated in
hearings on GINA which highlighted the existing loopholes in federal
and state laws protecting an individual's health information. Lacking a
strong and clear national law prohibiting genetic discrimination,
employees have been fired or denied insurance coverage based on this
most personal of information.
Today, the House will act to end genetic discrimination in hiring and
firing decisions. GINA will protect prospective and current employees
from discrimination based on a genetic predisposition regardless of
what state they live in. It will provide strong protections to those
individuals who may suffer from actual genetic discrimination now and
in the future. This legislation would pose a nominal cost to employers,
but provide priceless protections for American workers and peace of
mind for their families.
New Jersey, along with 32 other states, already prohibits genetic
discrimination in decisions on hiring, firing, or benefits. However,
only 25 states prohibit employers from requiring genetic information
from their employees. Worse yet, only 10 states prohibit employers from
obtaining genetic information or genetic tests of employees through any
means.
This vital legislation is supported by more than 200 groups and
associations including: the Hereditary Disease Foundation, the American
Association for the Advancement of Science, the American Jewish
Congress, the American Association of People with Disabilities, the
American Society of Human Genetics, the March of Dimes, the NAACP, the
National Fragile X Foundation, the National Hemophilia Foundation, the
National Council of La Raza, Citizens for Quality Sickle Cell Care, the
Coalition for Genetic Fairness, the Cornelia de Lange Syndrome
Foundation, the Cystic Fibrosis Foundation, The National Workrights
Institute, the Religious Action Center for Reform Judaism, Rett
Syndrome Research Foundation, the Spina Bifida Association of America
and many others.
Madam Speaker, it is long past time for the Genetic Non-
Discrimination Act to become law. I urge my colleagues to vote for this
important legislation, which will protect the rights of American
workers and their families.
Mr. STARK. Madame Speaker, I am pleased that we are finally passing
the Genetic Information Nondiscrimination Act.
This is a bill that has languished in Congress more than a decade.
The Senate has twice passed earlier versions of this bill with
unanimous votes, but the House has always blocked action.
It's good to see that times have changed. Members from both sides of
the aisle--as well as the President support the bill before us.
As I hope most of you know, this bill does something very simple, but
something very important as well. It protects people's genetic
information and family history from being used by health plans or
employers to discriminate against them. Enactment of this law is
critical to protect patients and for genetic science to advance.
Recent breakthroughs in medical science have made genetic testing
available to more patients, but with these breakthroughs comes the fear
that patients may be discriminated against by insurance companies and/
or employers if they are pre-disposed to suffer from a disease or other
condition.
We are here today to make sure that patients can undergo genetic
tests which could help with treatments or cures without fear that the
results will keep them from affordable, reliable health care.
This legislation is an overdue and important step toward ensuring
that our laws governing patient rights are as current as the latest
medical technology.
I urge strong support for this bill.
Mr. SHAYS. Madam Speaker, as an original cosponsor of H.R. 493, I
rise in strong support of this legislation and am grateful we are
finally considering it. The objective of this bill is simple:
preventing both health insurance companies and employers from using
genetic information to discriminate against individuals.
In the past decade, science has made remarkable advances on the human
genome. Genetic tests are already available to measure an individual's
likelihood of developing specific diseases. In fact, soon every
individual will have a genetic profile available that predicts the
diseases for which they are more at risk, and what side effects to
which they are more susceptible. These genetic advances will make
health care pre-emptive and ultimately save the health care system--and
consumers--money.
While these advances hold amazing potential, they also hold potential
for abuse. For example, health insurance companies could charge higher
rates--or even deny coverage--to individuals who are determined to be
at higher risk for certain disease or illnesses. Similarly, employers
could screen applicants for certain positions based on their genetic
make-up to get the individuals least likely to develop diseases.
Our laws need to keep pace with medical advancement. If Americans are
afraid of retribution from their health insurance company or from their
employer if they get genetic testing done, none of the medical advances
that are possible will be achieved. We simply must move forward in this
critical area of science, which is why I urge passage of this
legislation.
Mr. GEORGE MILLER of California. Madam Speaker, with that, I yield
back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from California (Mr. George Miller) that the House suspend
the rules and pass the bill, H.R. 493, as amended.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds
being in the affirmative, the ayes have it.
Mr. GEORGE MILLER of California. Madam Speaker, on that I demand the
yeas and nays.
The yeas and nays were ordered.
The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the
Chair's prior announcement, further proceedings on this question will
be postponed.

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