Definitions
In this chapter:
Commission
Employee; employer; employment agency; labor organization; member
In general
The term “employee” means—
an employee (including an applicant), as defined in section 2000e(f) of this title;
a State employee (including an applicant) described in section 2000e–16c(a) of this title;
a covered employee (including an applicant), as defined in section 1301 of title 2;
a covered employee (including an applicant), as defined in section 411(c) of title 3; or
an employee or applicant to which section 2000e–16(a) of this title applies.
Employer
The term “employer” means—
an employer (as defined in section 2000e(b) of this title);
an entity employing a State employee described in section 2000e–16c(a) of this title;
an employing office, as defined in section 1301 of title 2;
an employing office, as defined in section 411(c) of title 3; or
an entity to which section 2000e–16(a) of this title applies.
Employment agency; labor organization
Member
Family member
The term “family member” means, with respect to an individual—
a dependent (as such term is used for purposes of section 1181(f)(2) of title 29) of such individual, and
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).
Genetic information
In general
The term “genetic information” means, with respect to any individual, information about—
such individual’s genetic tests,
the genetic tests of family members of such individual, and
the manifestation of a disease or disorder in family members of such individual.
Inclusion of genetic services and participation in genetic research
Exclusions
Genetic monitoring
Genetic services
The term “genetic services” means—
a genetic test;
genetic counseling (including obtaining, interpreting, or assessing genetic information); or
genetic education.
Genetic test
In general
Exceptions
Notes
Effective Date
Short Title
Severability
Findings
Deciphering the sequence of the human genome and other advances in genetics open major new opportunities for medical progress. New knowledge about the genetic basis of illness will allow for earlier detection of illnesses, often before symptoms have begun. Genetic testing can allow individuals to take steps to reduce the likelihood that they will contract a particular disorder. New knowledge about genetics may allow for the development of better therapies that are more effective against disease or have fewer side effects than current treatments. These advances give rise to the potential misuse of genetic information to discriminate in health insurance and employment.
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.
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.
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.
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.”