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.
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.
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.
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.
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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.
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.
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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.
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,
See the ADA Home Page for more information.
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.
For more information see HIPAA information from US Department of Health and Human Services (HHS).
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:
An argument could be made that genetic discrimination based on racially or ethnically linked genetic disorders constitutes unlawful race or ethnicity discrimination.
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.