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University of Maryland GEMSTONES Barbara Fuller, J.D., R.H.I.A.

University of Maryland GEMSTONES Barbara Fuller, J.D., R.H.I.A. Branch Chief for Policy, Education and Outreach National Human Genome Research Institute/NIH February 6, 2003. April, 2003 Celebrating the Human Genome Completion of the Human Genome Project

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University of Maryland GEMSTONES Barbara Fuller, J.D., R.H.I.A.

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  1. University of Maryland GEMSTONES Barbara Fuller, J.D., R.H.I.A. Branch Chief for Policy, Education and Outreach National Human Genome Research Institute/NIH February 6, 2003

  2. April, 2003 Celebrating the Human Genome Completion of the Human Genome Project 50th anniversary of Watson & Crick’s description of DNA’s double helix The visions for future genomic research

  3. Virginia Commonwealth University Poll August/September 2001 Based on genetic test results: - Insurers will deny coverageYES 84% - Employers will deny jobs YES 69% Genetic testing should be easily availableYES 77% Would get tested YES 60% Would have their children tested YES 67%

  4. State Law Prohibitions on Genetic Discrimination in Health Insurance 1997 Alabama, Arizona, Connecticut, Florida, Hawaii, Illinois, Indiana, Kansas, Louisiana, Maine, Nevada, North Carolina, Ohio, Oklahoma, Tennessee, Texas 1998 Delaware, Kentucky, Missouri, New Mexico, Rhode Island, South Carolina, Vermont 1999 Montana, Washington 2000 Massachusetts, Michigan 2001 Arkansas, Nebraska 1991 Wisconsin 1993 Ohio 1994 California, Colorado 1995 Georgia, Minnesota, New Hampshire, Oregon 1996 Maryland, New Jersey, Virginia

  5. State Law Prohibitions on Genetic Discrimination in the Workplace 1989 Oregon 1990 New York 1991 Wisconsin 1992 Iowa, Rhode Island 1995 New Hampshire 1996 New Jersey, New York, Oklahoma 1997 Arizona, Illinois, North Carolina, Texas 1998 California, Connecticut, Delaware, Maine, Missouri, Oklahoma, Vermont 1999 Kansas, Nevada 2000 Massachusetts, Michigan 2001 Arkansas, Kansas, Maryland, Minnesota, Nebraska, South Dakota

  6. 107th Congress: Pending Federal Legislation Genetic Discrimination in Health Insurance H.R. 602, Genetic Nondiscrimination in Health Insurance and Employment Act; Louise Slaughter S. 19, Protecting Civil Rights for All Americans Act; Tom Daschle S. 318, Genetic Nondiscrimination in Health Insurance and Employment Act; Tom Daschle S. 382, Genetic Information Nondiscrimination in Health Insurance Act of 2001; Olympia Snowe S. 1995, Genetic Information Nondiscrimination Act of 2002; Snowe, Frist, Jeffords, Enzi, Collins, Hagel, Dewine, and Gregg 3/02

  7. 107th Congress: Pending Federal Legislation Genetic Discrimination in the Workplace H.R. 602, Genetic Nondiscrimination in Health Insurance and Employment Act, Louise Slaughter S. 19, Protecting Civil Rights for All Americans Act; Tom Daschle S. 318, Genetic Nondiscrimination on Health Insurance and Employment Act; Tom Daschle S. 1995, Genetic Information Nondiscrimination Act of 2002; Snowe, Frist, Jeffords, Enzi, Collins, Hagel, Dewine, and Gregg 3/02

  8. RESEARCH QUESTIONS Do individuals have the right to learn about diseases they may develop later in life without having that information divulged to insurance companies and potential employers? Does release of an individual’s genetic test results to insurers and employers lead to discrimination? Do physicians have an obligation to notify other family members when they learn that one family member is genetically predisposed to a debilitating disease? What should be our public policy regarding legislation that addresses genetic testing, privacy, and genetic discrimination? Does the fear of genetic discrimination inhibit individuals from undergoing genetic testing?

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