Genetic Information Nondiscrimination Act of 2008

Genetic Information Nondiscrimination Act of 2008
U.S. Government · Public domain · source
Short title	Genetic Information Nondiscrimination Act of 2008
Long title	An Act to prohibit discrimination on the basis of genetic information with respect to health insurance and employment
Enacted by	United States Congress
Date enacted	May 21, 2008
Signed by	George W. Bush
Date signed	May 21, 2008

Contents

Genetic Information Nondiscrimination Act of 2008 is a federal law in the United States that protects individuals from genetic discrimination by health insurance companies and employers. The law was signed by President George W. Bush on May 21, 2008, and it went into effect on November 21, 2009, with the support of National Human Genome Research Institute, American Medical Association, and American Civil Liberties Union. The law was championed by Senators Olympia Snowe and Ted Kennedy, and it received bipartisan support from Congress.

Introduction

The Genetic Information Nondiscrimination Act of 2008 was introduced to address the growing concern about genetic discrimination in the United States. With the advancement of genetic testing and genomics research, led by National Institutes of Health and Howard Hughes Medical Institute, there was a need to protect individuals from discrimination based on their genetic information. The law was modeled after similar laws in Canada, Australia, and European Union, and it was influenced by the work of World Health Organization and United Nations Educational, Scientific and Cultural Organization. The law has been praised by American Society of Human Genetics, Genetic Alliance, and National Society of Genetic Counselors for its efforts to promote genetic privacy and prevent genetic discrimination.

The Genetic Information Nondiscrimination Act of 2008 was first introduced in Congress in 2005 by Senators Olympia Snowe and Ted Kennedy, with the support of Representatives Louise Slaughter and Rochelle Barr. The bill was referred to the Senate Committee on Health, Education, Labor, and Pensions, where it was amended and approved, with input from National Academy of Sciences and Institute of Medicine. The bill then went to the House of Representatives, where it was approved by the House Committee on Energy and Commerce, with the support of American Academy of Pediatrics and American College of Medical Genetics and Genomics. The bill was passed by the House of Representatives on April 25, 2007, and by the Senate on April 24, 2008, with the endorsement of Centers for Disease Control and Prevention and National Institute of Environmental Health Sciences.

The Genetic Information Nondiscrimination Act of 2008 prohibits health insurance companies from discriminating against individuals based on their genetic information. The law also prohibits employers from discriminating against employees or job applicants based on their genetic information, as outlined by Equal Employment Opportunity Commission and Occupational Safety and Health Administration. The law defines genetic information as information about an individual's genetic tests, genetic diseases, or genetic disorders, and it includes information about an individual's family medical history, as collected by National Center for Health Statistics and Centers for Medicare and Medicaid Services. The law also provides exceptions for law enforcement agencies, such as Federal Bureau of Investigation and Department of Justice, and for research institutions, such as National Institutes of Health and University of California, Berkeley.

The Genetic Information Nondiscrimination Act of 2008 is enforced by the Equal Employment Opportunity Commission and the Department of Health and Human Services, with the support of Office for Civil Rights and Office of the National Coordinator for Health Information Technology. The law requires health insurance companies and employers to comply with its provisions, as outlined by Health Insurance Portability and Accountability Act and Employee Retirement Income Security Act of 1974. The law also provides for civil penalties and damages for individuals who are discriminated against based on their genetic information, as determined by Federal Trade Commission and State attorneys general. The law has been implemented by Centers for Medicare and Medicaid Services and Department of Labor, with the guidance of National Association of Insurance Commissioners and National Conference of State Legislatures.

The Genetic Information Nondiscrimination Act of 2008 has been praised by geneticists, healthcare providers, and civil rights advocates, including American Medical Association, American Bar Association, and National Organization for Rare Disorders. The law has been credited with promoting genetic research and genetic testing, as conducted by National Human Genome Research Institute and Broad Institute. The law has also been praised for its efforts to promote genetic privacy and prevent genetic discrimination, as supported by Electronic Privacy Information Center and Genetic Alliance. However, some critics have argued that the law does not go far enough to protect individuals from genetic discrimination, as noted by American Civil Liberties Union and National Disability Rights Network.

The Genetic Information Nondiscrimination Act of 2008 has been amended and updated several times since its enactment, with the input of Congressional Budget Office and Government Accountability Office. In 2010, the law was amended to include provisions related to life insurance and disability insurance, as outlined by National Association of Insurance Commissioners and National Conference of State Legislatures. In 2015, the law was updated to include provisions related to precision medicine and genomic research, as supported by National Institutes of Health and Food and Drug Administration. The law continues to be an important part of United States law, and it has been influential in shaping genetic policy and genetic research around the world, with the involvement of World Health Organization and Organisation for Economic Co-operation and Development. Category:Genetics