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Quick Links for this page:

• Federal genetics policy
• State genetics policies
• Pre-GINA federal antidiscrimination laws and how they apply to genetics
• Recommendations for future legislation
• Why legislation is needed
• Cases of genetic discrimination
• More information

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

• White House Press Release, May 21, 2008
• Nature: Genetics bill cruises through Senate, April 30, 2008.
• Genetic Alliance: GINA Coverage
• THOMAS: HR 493 Genetic Information Nondiscrimination Act of 2007
• Wired: 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 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.

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.

More information is available from the National Conference of State Legislatures

• State genetics laws by specific topic and state
• Genetics Legislation Database: Contains information on genetics bills considered in state legislatures from 2004 to present.
• Genetic Technologies Project
• Report: Genetics: A Snapshot for State Legislatures
• Genetics policy briefs
• Article: Plunging into the gene pool, March 2007
• State genetics reports

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.

• 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.

• 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:

• Administration Simplification Under HIPAA: National Standards for Transactions, Security, and Privacy - A fact sheet from US Department of Health and Human Services (HHS) (March 2003).
• HHS Issues Privacy Rules for Use of Health Records - Freedom of Information Center article explains the latest rules for HIPAA, August, 2002.
• HHS Announces Final Regulation Establishing First-ever National Standards to Protect Patients' Personal Medical Records - HHS Press Release, (December 2000).
• Summary of the Final Regulation - HHS Fact Sheet (December 2000).

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

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.

• 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.

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 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. 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 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

• Policy & Ethics Current Topics: Privacy, Discrimination and Legal Issues - Links to policy and legislative information on genetic privacy, genetic discrimination, patenting genetic information, and DNA forensics. From the National Human Genome Research Institute.
• Genetic Education Materials (GEM) Database - Searchable listing of public health genetics policy documents and clinical genetics educational materials. From the National Newborn Screening and Genetics Resource Center (NNSGRC).
• DisabilityInfo.gov - Comprehensive Federal Web site of disability-related government resources.
• Workplace Rights: Genetic Discrimination - Information from the American Civil Liberties Union.
• How Private Is My Medical Information? - Fact sheet from the Privacy Rights Clearinghouse, October 2002.

Organizations

• Genetics & Public Policy Center
• Council for Responsible Genetics
• National Patient Advocate Foundation
• American Civil Liberties Union
• Health Privacy Project
• Privacy Rights Clearinghouse

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.
• CRG Genetic Discrimination Position Paper (PDF) - From the Council for Responsible Genetics, January 2001.
• Biotechnology Industry Organization (BIO) - Policy Statement Regarding the Prohibition of Discriminatory Use of Medical Information, March 1999.
• Report of the NIH-DOE Joint Working Group on Ethical, Legal, and Social Implications of Human Genome Research (ELSI Working Group) (1996). The 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).

Articles

• 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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