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Breaking News: GINA Becomes
Law May 2008
On May 21st, President Bush signed into law the Genetic Information
Nondiscrimination Act (GINA), which prohibits U.S. insurance
companies and employers from discriminating on the basis of
information derived from genetic tests. GINA passed both houses
of Congress with a vote in the U.S. House of Representatives
of 414 to 1. The bill had passed in the House twice before,
most recently last year when the vote was 420 to 3. The U.S.
Senate unamiously passed the current bill after compromises
were reached on areas of disagreement that had held up its
passage for several months.
GINA protects Americans from discrimination based on information
derived from genetic tests. It forbids insurance companies
from discriminating through reduced coverage or pricing and
prohibits employers from making adverse employment decisions
based on a person’s genetic code. In addition, insurers
and employers are not allowed under the law to request or
demand a genetic test.
A 2001 study by the American Management Association showed that
nearly two-thirds of major U.S. companies require medical examinations
of new hires. In addition, 14% conduct tests for susceptibility
to workplace hazards, 3% for breast and colon cancer, and 1% for
sickle cell anemia; 10% collect information about family medical
“Because of this legislation, Americans will be free to undergo
genetic testing for diseases such as cancer, heart disease, diabetes,
and Alzheimer’s without fearing for their job or health insurance,”
said House speaker Nancy Pelosi (D-Calif.) in a statement.
Increased genetic testing makes it more likely that researchers
will come up with early, lifesaving therapy for a wide range of
diseases with hereditary links, lawmakers said. Genetic testing
also will help doctors catch problems early, perhaps leading to
preventive treatment and lower costs.
For More Information
Quick Links for
I. Federal Policy History
There are two primary pieces of federal legislation that directly
apply to genetics nondiscrimination: The Genetic Information Nondiscrimination
Act of 2008 and the 2000 Executive Order to to prohibit discrimination
in federal employment based on genetic discrimination.
Genetic Information Nondiscrimination Act (GINA)
On May 21, 2008, President Bush signed into law the Genetic Information
Nondiscrimination Act (GINA), which prohibits U.S. insurance companies
and employers from discriminating on the basis of information derived
from genetic tests. GINA passed both houses of Congress with a vote
in the U.S. House of Representatives of 414 to 1. The bill had passed
in the House twice before, most recently last year when the vote was
420 to 3. The U.S. Senate unamiously passed the current bill after
compromises were reached on areas of disagreement that had held up
its passage for several months.
GINA protects Americans from discrimination based on information
derived from genetic tests. It forbids insurance companies from discriminating
through reduced coverage or pricing and prohibits employers from making
adverse employment decisions based on a person’s genetic code.
In addition, insurers and employers are not allowed under the law
to request or demand a genetic test.
For More Information
House Press Release, May 21, 2008
Genetics bill cruises through Senate, April 30, 2008.
Alliance: GINA Coverage
HR 493 Genetic Information Nondiscrimination Act of 2007
Genetic Protections Skimp on Privacy, Says Gene Tester, May 2008
Executive Order Protecting Federal Employees
On February 8, 2000, U.S. President Clinton signed an executive
order prohibiting every federal department and agency from using
genetic information in any hiring or promotion action. This executive
order, endorsed by the American Medical Association, the American College
of Medical Genetics, the National Society of Genetic Counselors, and the
- Prohibits federal employers from requiring or requesting
genetic tests as a condition of being hired or receiving benefits.
Employers cannot request or require employees to undergo genetic
tests in order to evaluate an employee's ability to perform his
or her job.
- Prohibits federal employers from using protected genetic
information to classify employees in a manner that deprives them
of advancement opportunities. Employers cannot deny employees
promotions or overseas posts because of a genetic predisposition
for certain illnesses.
- Provides strong privacy protections to any genetic information
used for medical treatment and research. Under the EO, obtaining
or disclosing genetic information about employees or potential employees
is prohibited, except when it is necessary to provide medical treatment
to employees, ensure workplace health and safety, or provide occupational
and health researchers access to data. In every case where
genetic information about employees is obtained, it will be subject
to all Federal and state privacy protections.
States have a patchwork of genetic-information nondiscrimination laws,
none of them comprehensive. Existing state laws differ in coverage,
protections afforded, and enforcement schemes. Some of the first
state laws enacted to address this issue prohibited discrimination
against individuals with specific genetic traits or disorders.
Other state laws regulate both the use of genetic testing in employment
decisions and the disclosure of genetic test results. These
state laws generally prohibit employers from requiring workers and
applicants to undergo genetic testing as a condition of employment.
Some states permit genetic testing when it is requested by the worker
or applicant for the purpose of investigating a compensation
claim or determining the worker's susceptibility to potentially toxic
chemicals in the workplace. These statutes often require the worker
to provide informed written consent for such testing, contain specific
restrictions governing disclosure, and prevent the employer from taking
adverse action against the employee.
More information is available from the National Conference of State
See also the NIH NHGRI Policy
and Legislation Database
III. Pre-Gina Federal Anti-Discrimination
Laws and How They Apply to Genetics
Although not fully tested in the courts, some believe that parts
of existing nondiscrimination laws could be interpreted to include
genetic discrimination. Here is a brief overview of these laws
and how they apply to genetics.
Americans with Disabilities Act of 1990 (ADA)
The most likely current source of protection against genetic discrimination
in the workplace is provided by laws prohibiting discrimination based
on disability. Title I of the Americans with Disabilities Act (ADA), enforced
by the Equal Employment Opportunity Commission (EEOC), and similar disability-based
antidiscrimination laws such as the Rehabilitation Act of 1973 do not
explicitly address genetic information, but they provide some protections
against disability-related genetic discrimination in the workplace.
In March 1995, the EEOC issued an interpretation of the ADA.
The guidance, however, is limited in scope and legal effect. It is
policy guidance that does not have the same legal binding effect on a court
as a statute or regulation and has not been tested in court. According
to the interpretation,
- Prohibits discrimination against a person who is regarded as having
- Protects individuals with symptomatic genetic disabilities the same
as individuals with other disabilities.
- Does not protect against discrimination based on unexpressed genetic
- Does not protect potential workers from requirements or requests
to provide genetic information to their employers after a conditional
offer of employment has been extended but before they begin work.
(Note: this is a heightened concern because genetic samples can be stored.)
- Does not protect workers from requirements to provide medical information
that is job related and consistent with business necessity.
- Entities that discriminate on the basis of genetic predisposition
are regarding the individuals as having impairments, and such individuals
are covered by the ADA.
- Unaffected carriers of recessive and X-linked disorders, individuals
with late-onset genetic disorders who may be identified through genetic
testing or family history as being at high risk of developing the disease
are not covered by the ADA
See the ADA Home Page
for more information.
Health Insurance Portability and Accountability Act of 1996 (HIPAA)
The Health Insurance Portability and Accountability Act (HIPAA) applies
to employer-based and commercially issued group health insurance only.
HIPAA is the only federal law that directly addresses the issue of genetic
discrimination. There is no similar law applying to private individuals
seeking health insurance in the individual market.
- Prohibits group health plans from using any health status-related
factor, including genetic information, as a basis for denying or limiting
eligibility for coverage or for charging an individual more for coverage.
- Limits exclusions for preexisting conditions in group health plans
to 12 months and prohibits such exclusions if the individual has been
covered previously for that condition for 12 months or more.
- States explicitly that genetic information in the absence of a current
diagnosis of illness shall not be considered a preexisting condition.
- Doesn't prohibit employers from refusing to offer health coverage
as part of their benefits packages.
For more information see HIPAA
information from US Department of Health and Human Services (HHS) or the
HIPAAdvisory Web site.
HIPAA National Standards to Protect Patients' Personal Medical Records,
This regulation would protect medical records and other personal health
information maintained by health care providers, hospitals, health plans
and health insurers, and health care clearinghouses. The regulation was
mandated when Congress failed to pass comprehensive privacy legislation
(as required by HIPAA) by 1999. The new standards: limit the nonconsensual
use and release of private health information; give patients new rights
to access their medical records and to know who else has accessed them;
restrict most disclosure of health information to the minimum needed for
the intended purpose; establish new criminal and civil sanctions for improper
use or disclosure; and establish new requirements for access to records
by researchers and others. They are not specific to genetics, rather they
are sweeping regulations governing all personal health information.
For more on the standards, see:
Title VII of the Civil Rights Act of 1964
An argument could be made that genetic discrimination based on racially
or ethnically linked genetic disorders constitutes unlawful race or ethnicity
- Protection is available only where an employer engages in discrimination
based on a genetic trait that is substantially related to a particular
race or ethnic group.
- A strong relationship between race or national origin has been established
for only a few diseases.
for Future Legislation
In 1995, the NIH-DOE Joint Working Group on Ethical, Legal, and Social
Implications of Human Genome Research (ELSI
Working Group) and the National Action Plan on Breast Cancer (NAPBC)
developed and published the following recommendations for state and federal
policy makers to protect against genetic discrimination (Science,
vol. 270, Oct. 20, 1995):
- "Genetic information" is information about genes, gene products,
or inherited characteristics that may derive from the individual or
a family member.
- "Insurance provider" means an insurance company, employer, or any
other entity providing a plan of health insurance or health benefits,
including group and individual health plans whether fully insured or
- Insurance providers should be prohibited from using genetic information
or an individual's request for genetic services to deny or limit any
coverage or establish eligibility, continuation, enrollment, or contribution
- Insurance providers should be prohibited from establishing differential
rates or premium payments based on genetic information or an individual's
request for genetic services.
- Insurance providers should be prohibited from requesting or requiring
collection or disclosure of genetic information. Insurance providers
and other holders of genetic information should be prohibited from releasing
genetic information without the individual's prior written authorization.
Written authorization should be required for each disclosure and include
to whom the disclosure would be made.
A final report of the ELSI
Working Group was released in 1996.
V. Why Legislation Was Needed
(1) Based on genetic information, employers may try to avoid hiring workers
they believe are likely to take sick leave, resign, or retire early for
health reasons (creating extra costs in recruiting and training new staff),
file for workers' compensation, or use healthcare benefits excessively.
(2) Some employers may seek to use genetic tests to discriminate against
workers--even those who do not and may never show signs of disease--because
the employers fear the cost consequences.
(3) The economic incentive to discriminate based on genetic information
is likely to increase as genetic research advances and the costs of genetic
(4) Genetic predisposition or conditions can lead to workplace discrimination,
even in cases where workers are healthy and unlikely to develop disease
or where the genetic condition has no effect on the ability to perform
(5) Given the substantial gaps in state and federal protections against
employment discrimination based on genetic information, comprehensive
federal legislation is needed to ensure that advances in genetic technology
and research are used to address the health needs of the nation--and not
to deny individuals employment opportunities and benefits. Federal legislation
would establish minimum protections that could be supplemented by state
(6) Insurers can still use genetic information in the individual market
in decisions about coverage, enrollment, and premiums.
(7) Insurers can still require individuals to take genetic tests.
(8) Individuals are not protected from the disclosure of genetic information
to insurers, plan sponsors (employers), and medical information bureaus,
without their consent.
(9) Penalties in HIPAA for discrimination and disclosure violations should
be strengthened in order to ensure individuals of the protections afforded
by the legislation.
VI. Landmark Cases of Genetic Discrimination
Although no genetic-employment discrimination case has been brought before
U.S. federal or state courts, in 2001 the Equal Employment Opportunity
Commission (EEOC) settled the first lawsuit alleging this type of discrimination.
EEOC filed a suit against the Burlington Northern Santa Fe (BNSF) Railroad
for secretly testing its employees for a rare genetic condition that causes
carpal tunnel syndrome as one of its many symptoms. BNSF claimed that
the testing was a way of determining whether the high incidence of repetitive-stress
injuries among its employees was work-related. Besides testing for this
rare problem, company-paid doctors also were instructed to screen for
several other medical conditions such as diabetes and alcoholism. BNSF
employees examined by company doctors were not told that they were being
genetically tested. One employee who refused testing was threatened with
On behalf of BNSF employees, EEOC argued that the tests were unlawful
under the Americans with Disabilities Act because they were not job-related,
and any condition of employment based on such tests would be cause for
illegal discrimination based on disability. The lawsuit was settled quickly
with BNSF agreeing to everything sought by EEOC.
Besides the BNSF case, the Council for Responsible Genetics claims that
hundreds of genetic-discrimination cases have been documented and describes
select cases in its Genetic
Discrimination Position Paper (PDF). In one case, genetic testing
indicated that a young boy had Fragile X Syndrome, an inherited form of
mental retardation. The insurance company for the boy's family dropped
his health coverage, claiming the syndrome was a preexisting condition.
In another case, a social worker lost her job within a week of mentioning
that her mother had died of Huntington's disease and that she had a 50%
chance of developing it.
Despite claims of hundreds of genetic-discrimination incidents, an article
from the January 2003 issue of the European Journal of Human Genetics
reports a real need for a comprehensive investigation of these claims.
The article warns that many studies rely on unverified, subjective accounts
from individuals who believe they have been unfairly subjected to genetic
discrimination by employers or insurance companies. Rarely are these subjective
accounts assessed objectively to determine whether actions taken by employers
and insurers were truly based on genetic factors or other legitimate concerns.
Genetic Discrimination in the Workplace - Article from Human
Genome News, February 2002.
Federal Privacy Rules Stump Researchers - The Scientist 15:
33, September 17, 2001 - A new federal privacy rule in the Health Insurance
Portability and Accountability Act of 1996 (HIPAA)--requires researchers
who use the nation's tissue banks to obtain authorizations when they
use patient-specific information, such as medical histories. As of April
2003, both criminal and civil penalties for violations can be applied.
Slip in Your Genes - Scientific American, January 2001 -
Evidence builds that employers hire and fire based on genetic tests;
meanwhile, protective legislation languishes.
Genetic Research Threaten Our Civil Liberties? - Article from actionbioscience.org,
August 2000. Mapping the human genome may lead to new medical breakthroughs;
however, it may also lead to an individual's loss of privacy, discrimination
by class or genetic profile, and genetic enhancement of select individuals
- Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics
by Leon Kass. 313 pp., 2002.
Information on this page
was taken from several sources, including the NIH NHGRI Legislation Office
in the Office of Policy Coordination, Department of Labor, Human Genome
News, National Action Plan on Breast Cancer, and U.S. Department
of Energy–National Institutes of Health Working Group on Ethical,
Legal, and Social Implications of Genome Research.