Genetic Discrimination - Public Concern Against Discrimination

Public Concern Against Discrimination

The term genetic discrimination was first coined by the Council for Responsible Genetics (CRG). In 1993, the Ethical, Legal and Social Implications (ELSI) Working Group of the Human Genome Project issued a report titled "Genetic Information and Health Insurance". The report recommended that people be eligible for health insurance no matter what is known about their past, present or future health status. Two years later, the ELSI Working Group and the National Action Plan on Breast Cancer (NAPBC) jointly developed guidelines to assist federal and state agencies in preventing genetic discrimination in health insurance.

Further, the ELSI Working Group and NAPBC recommended that health insurers be prohibited from using genetic information or an individual's request for genetic services to deny or limit health insurance coverage, establish differential rates or have access to an individual's genetic information without that individual's written authorization. Written authorization, the groups said, should be required for each separate disclosure and should specify the recipient of the disclosed information.

Next, the National Human Genome Research Institute (NHGRI) and the United States Department of Energy, acting through the ELSI Working Group, cosponsored a series of workshops in the mid-1990s on genetic discrimination in health insurance and the workplace. The findings and recommendations of the workshop participants were published in Science: (Genetic Information and the Workplace: Legislative Approaches and Policy Challenges ) magazine, the monthly journal of the American Association for the Advancement of Science.

In 1993, the National Academy of Sciences Institute of Medicine (IOM) Committee on Assessing Genetic Risks expressed concern that American workers were losing their jobs or their health insurance on the basis of information obtained through genetic testing. By 1996, the Council for Responsible Genetics had identified over 200 cases of genetic discrimination.

In 2008, the New York Times reported that some individuals avoid genetic testing out of fear it will impede their ability to purchase insurance or find a job. They also reported that evidence of actual discrimination was rare.