42 USC 2000ff

§ 2000ff–1

TITLE 42—THE PUBLIC HEALTH AND WELFARE

tion 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 intellectual disabilities, 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been repealed, and many have been modified to include essential constitutional requirements of due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 [Pub. L. 92–294, see
Tables for classification], 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 [sic] 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.’’
[For meaning of references to an intellectual disability and to individuals with intellectual disabilities in
provisions amended by section 2 of Pub. L. 111–256, see
section 2(k) of Pub. L. 111–256, set out as a note under
section 1400 of Title 20, Education.]

§ 2000ff–1. 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 com-

Page 4456

pensation, terms, conditions, or privileges of
employment of the employee, because of genetic information with respect to the employee; or
(2) to limit, segregate, or classify the employees of the employer in any way that would
deprive or tend to deprive any employee of employment opportunities or otherwise adversely
affect the status of the employee as an employee, because of genetic information with
respect to the employee.
(b) Acquisition of genetic information
It shall be an unlawful employment practice
for an employer to request, require, or purchase
genetic information with respect to an employee
or a family member of the employee except—
(1) where an employer inadvertently requests or requires family medical history of
the employee or family member of the employee;
(2) where—
(A) health or genetic services are offered
by the employer, including such services offered as part of a wellness program;
(B) the employee provides prior, knowing,
voluntary, and written authorization;
(C) only the employee (or family member
if the family member is receiving genetic
services) and the licensed health care professional or board certified genetic counselor
involved in providing such services receive
individually identifiable information concerning the results of such services; and
(D) any individually identifiable genetic
information provided under subparagraph
(C) in connection with the services provided
under subparagraph (A) is only available for
purposes of such services and shall not be
disclosed to the employer except in aggregate terms that do not disclose the identity
of specific employees;
(3) where an employer requests or requires
family medical history from the employee to
comply with the certification provisions of
section 2613 of title 29 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

Page 4457

TITLE 42—THE PUBLIC HEALTH AND WELFARE

et seq.), the Federal Mine Safety and
Health Act of 1977 (30 U.S.C. 801 et seq.), or
the Atomic Energy Act of 1954 (42 U.S.C.
2011 et seq.); or
(ii) State genetic monitoring regulations, in the case of a State that is implementing genetic monitoring regulations
under the authority of the Occupational
Safety and Health Act of 1970 (29 U.S.C. 651
et seq.); and
(E) the employer, excluding any licensed
health care professional or board certified
genetic counselor that is involved in the genetic monitoring program, receives the results of the monitoring only in aggregate
terms that do not disclose the identity of
specific employees; or
(6) where the employer conducts DNA analysis for law enforcement purposes as a forensic
laboratory or for purposes of human remains
identification, and requests or requires genetic
information of such employer’s employees, but
only to the extent that such genetic information is used for analysis of DNA identification
markers for quality control to detect sample
contamination.
(c) Preservation of protections
In the case of information to which any of
paragraphs (1) through (6) of subsection (b) applies, such information may not be used in violation of paragraph (1) or (2) of subsection (a) or
treated or disclosed in a manner that violates
section 2000ff–5 of this title.
(Pub. L. 110–233, title II, § 202, May 21, 2008, 122
Stat. 907.)
REFERENCES IN TEXT
The Occupational Safety and Health Act of 1970, referred to in subsec. (b)(5)(D), is Pub. L. 91–596, Dec. 29,
1970, 84 Stat. 1590, which is classified principally to
chapter 15 (§ 651 et seq.) of Title 29, Labor. For complete
classification of this Act to the Code, see Short Title
note set out under section 651 of Title 29 and Tables.
The Federal Mine Safety and Health Act of 1977, referred to in subsec. (b)(5)(D)(i), is Pub. L. 91–173, Dec. 30,
1969, 83 Stat. 742, which is classified principally to chapter 22 (§ 801 et seq.) of Title 30, Mineral Lands and Mining. For complete classification of this Act to the Code,
see Short Title note set out under section 801 of Title
30 and Tables.
The Atomic Energy Act of 1954, referred to in subsec.
(b)(5)(D)(i), is act Aug. 1, 1946, ch. 724, as added by act
Aug. 30, 1954, ch. 1073, § 1, 68 Stat. 921, which is classified
generally to chapter 23 (§ 2011 et seq.) of this title. For
complete classification of this Act to the Code, see
Short Title note set out under section 2011 of this title
and Tables.

§ 2000ff–2. 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

§ 2000ff–2

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 chapter.
(b) Acquisition of genetic information
It shall be an unlawful employment practice
for an employment agency to request, require,
or purchase genetic information with respect to
an individual or a family member of the individual except—
(1) where an employment agency inadvertently requests or requires family medical history of the individual or family member of the
individual;
(2) where—
(A) health or genetic services are offered
by the employment agency, including such
services offered as part of a wellness program;
(B) the individual provides prior, knowing,
voluntary, and written authorization;
(C) only the individual (or family member
if the family member is receiving genetic
services) and the licensed health care professional or board certified genetic counselor
involved in providing such services receive
individually identifiable information concerning the results of such services; and
(D) any individually identifiable genetic
information provided under subparagraph
(C) in connection with the services provided
under subparagraph (A) is only available for
purposes of such services and shall not be
disclosed to the employment agency except
in aggregate terms that do not disclose the
identity of specific individuals;
(3) where an employment agency requests or
requires family medical history from the individual to comply with the certification provisions of section 2613 of title 29 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