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I. Federal Policy History
No federal legislation has been passed relating to genetic discrimination
in individual insurance coverage or to genetic discrimination in
the workplace. Several bills were introduced during the last
decade. Some of these bills attempted to amend existing civil rights
and labor laws, while others stood alone. The primary public concerns
are that (1) insurers will use genetic information to deny, limit, or
cancel insurance policies or (2) employers will use genetic information
against existing workers or to screen potential employees. Because
DNA samples can be held indefinitely, there is the added threat that samples
will be used for purposes other than those for which they were gathered.
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
Genetic Alliance
- 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.
Bills Introduced to Congress
The following bills have been read and referred to Congressional committees.
- H.R.
3636 - Genetic Privacy and Nondiscrimination Act of 2003. Introduced
to the House of Representatives, November 21, 2003.
- S.
1053 - Genetic Information Nondiscrimination Act of 2003 - Introduced
to the Senate, May 13, 2003.
- H.R.
1910 - To prohibit discrimination on the basis of genetic information
with respect to health insurance. Introduced to the House of Representatives,
May 1, 2003.
- S.
16 - Equal Rights and Equal Dignity for Americans Act of 2003 -
To protect the civil rights of all Americans, and for other purposes.
Introduced to the Senate, January 7, 2003.
- Previous Bills (No longer candidates for law)
- S.1995
- Genetic Information Nondiscrimination Act of 2002.
- S.318
- Genetic Nondiscrimination in Health Insurance and Employment Act
2001.
- S. 382
- Genetic Information Nondiscrimination in Health Insurance Act of
2001
- H.R.
602 - Genetic Nondiscrimination in Health Insurance and Employment
Act 2001.
For more information on federal policy regarding genetic discrimination,
see Policy and Legislation:
Discrimination from the National Human Genome Research Institute.
Congressional Hearings
- Testimony of Bobby
P. Jindal - Senate Committee on Health, Education, Labor and Pensions
Hearing, February 13, 2002.
- Report:
Protecting Against Genetic Discrimination: The Limits of Existing Law
- Hearing before the Senate Committee on Health, Education, Labor and
Pension, February 13, 2002.
- Genetic
Non-Discrimination - Hearing Before the Senate Committee on Health,
Education, Labor and Pension, July 25, 2001 - Hearing report from the
Office of Legislative Policy and Analysis.
-
Potential for Discrimination in Health Insurance Based on Predictive
Genetic Tests, July 11, 2001 - Hearing before the US House of Representatives
Committee on Energy and Commerce.
II. State
Policy History
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.
[See charts of state genetics laws and information on genetics legislative
activity on the National
Conference of State Legislatures Web site. See the NIH NHGRI Policy and Legislation Database
of all genetics insurance discrimination legislation.]
State
Genetics Reports
III. Existing
Federal Anti-Discrimination Laws and How They Apply to Genetics
Although no specific federal genetic nondiscrimination legislation has
been enacted, 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.
- Prohibits discrimination against a person who is regarded as having
a disability.
- Protects individuals with symptomatic genetic disabilities the same
as individuals with other disabilities.
- Does not protect against discrimination based on unexpressed genetic
conditions.
- 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.
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,
- 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,
Dec. 2002
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
discrimination.
- 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.
IV. Recommendations
for Future Legislation
Workplace Discrimination
Based on previous recommendations from the National Action Plan on Breast
Cancer (NAPBC) and the NIH-DOE Working Group on the Ethical, Legal, and
Social Implications (ELSI) of human genome research, in a 1998 report
the Clinton Administration announced recommendations for future legislation
to ensure that discoveries made possible by the Human Genome Project are
used to improve health and not to discriminate against workers or their
families. These recommendations are
- Employers should not require or request that employees or potential
employees take a genetic test or provide genetic information as a condition
of employment or benefits.
- Employers should not use genetic information to discriminate against,
limit, segregate, or classify employees in a way that would deprive
them of employment opportunities.
- Employers should not obtain or disclose genetic information about
employees or potential employees under most circumstances.
Genetic testing and the use of genetic information by employers should be
permitted in the following situations to ensure workplace safety and health
and to preserve research opportunities. However, in all cases where genetic
information about employees is obtained, the information should be maintained
in medical files that are kept separate from personnel files, treated as
confidential medical records, and protected by applicable state and federal
laws.
- An employer should be permitted to monitor employees for the effects
of a particular substance found in the workplace to which continued
exposure could cause genetic damage under certain circumstances. Informed
consent and assurance of confidentiality should be required. In addition,
employers may use the results only to identify and control adverse conditions
in the workplace and to take action necessary to prevent significant
risk of substantial harm to the employee or others.
- The statutory authority of a federal agency or contractor to promulgate
regulations, enforce workplace safety and health laws, or conduct occupational
or other health research should not be limited.
- An employer should be able to disclose genetic information for research
and other purposes with the written, informed consent of the individual.
These recommendations should apply to public and private-sector employers,
unions, and labor-management groups that conduct joint apprenticeship and
other training programs. Employment agencies and licensing agencies that
issue licenses, certificates, and other credentials required to engage in
various professions and occupations also should be covered.
Individuals who believe they have been subjected to workplace discrimination
based on genetic information should be able to file a charge with the
Equal Employment Opportunity Commission, Department of Labor, or other
appropriate federal agency for investigation and resolution. The designated
agency should be authorized to bring lawsuits in the federal courts to
resolve issues that would not settle amicably. The courts should have
the authority to halt the violations and order relief, such as hiring,
promotion, back pay, and compensatory and punitive damages to the individual.
Alternatively, an individual should be able to elect to bring a private
lawsuit in federal or state court to obtain the same type of relief plus
reasonable costs and attorney's fees. To enforce these protections, the
designated enforcement agency must be given sufficient additional resources
to investigate and prosecute allegations of discrimination.
Insurance Discrimination
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):
Definitions
- "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
self-funded.
Recommendations
- 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
requirements.
- 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.
Sample Genetic Privacy Act and Commentary
A draft bill (Genetic
Privacy Act) was written in 1995 by George Annas of the Boston University
School of Public Health to assist legislators. This sample bill proposed
that access to information in genetic data banks should be regulated during
sample collection, storage, disclosure, and use. Several state lawmakers
adapted language and concepts from the draft bill to write proposals for
legislation in their own states.
V. Why Legislation
Is Needed Now
(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
testing decrease.
(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
work
(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
laws.
(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. 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
possible termination.
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.
VII. More
Information
Web Sites
Organizations
Position Statements
- American
Academy of Actuaries: National Conference of Insurance Legislators
- Hearing on Proposed Genetic Discrimination Model Act
- American
College of Medical Genetics (PDF) - Points to Consider in Preventing
Unfair Discrimination Based on Genetic Disease Risk, December 2001.
- American
Society of Human Genetics (ASHG) - Endorsement of Senate Bill 318,
the Genetic Nondiscrimination and Health Insurance and Employment Act,
December 18, 2001.
- President Bush's
Radio Address on Genetic Discrimination - June 23, 2001.
- CRG
Genetic Discrimination Position Paper (PDF) - From the Council for
Responsible Genetics, January 2001.
- Genetic
Alliance - Statement on Genetic Discrimination in Health Insurance
and Employment Act, June 21, 2000.
- Biotechnology
Industry Organization (BIO) - Policy Statement Regarding the Prohibition
of Discriminatory Use of Medical Information, March 1999.
- Universal Declaration
on the Human Genome and Human Rights - From the United Nations Educational,
Scientific, and Cultural Organization (UNESCO), November 1997.
Articles
- Human Rights and Genetic Discrimination: Protecting Genomics' Promise for Public Health
- from the Journal of Law, Medicine, and Ethics (September 22, 2003)
- Medical
Privacy Law Stirs Controversy - Article in the Star-Telegram
Fort Worth News posted February 23, 2003.
- Analyzing
Genetic Discrimination in the Workplace - Article from Human
Genome News, February 2002.
- New
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.
- Pink
Slip in Your Genes - Scientific American, January 2001 -
Evidence builds that employers hire and fire based on genetic tests;
meanwhile, protective legislation languishes.
- Does
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
or populations.
Books
- 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.
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