Human Genome Project
U.S. Department of Energy

Genetics Legislation

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Federal Policy History

Gene Patenting

The U.S. Supreme Court ruled on June 13, 2013, that naturally occuring DNA cannot be patented but that synthetically created cDNA is patent eligbile. The Court heard arguments in the case of Association for Molecular Pathology v. Myriad Genetics, Inc., on April 15, 2013.

Warrantless Collection of DNA

On June 3, 2013, the U.S. Supreme Court ruled 5-4 in favor of a Maryland law that allows warrantless collection of DNA from persons who have been arrested (Maryland v. King) See: slip opinion and argument transcript. Read a summary account at NPR.

Genetic Discrimination

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 prohibit discrimination in federal employment based on genetic discrimination. The 2010 Affordable Care Act contains further anti-discrimination measures including prevention of health insurers from refusing individuals coverage because of pre-existing conditions and prevention of adjustment of premiums because of medical conditions.

Genetic Information Nondiscrimination Act (GINA) Public Law 110-233, H.R. 493, S. 358

On May 21, 2008, President G.W. 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. 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

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 was 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.

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

  • NIH NHGRI Table of State Statutes Related to Genomics
  • National Conference of State Legislatures Health Resources
  • National Conference of State Legislatures Report: Genetics: A Snapshot for State Legislatures

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. Following 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.
  • 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 website 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 U.S. Department of Health and Human Services.

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 healthcare 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 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.