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.

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Presentation transcript:

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 50 th anniversary of Watson & Crick’s description of DNA’s double helix The visions for future genomic research

Virginia Commonwealth University Poll August/September 2001 Based on genetic test results: - Insurers will deny coverageYES84% - Employers will deny jobsYES69% Genetic testing should be easily availableYES77% Would get testedYES60% Would have their children testedYES67%

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

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

107 th 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

107 th 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

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?