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March 21, 2003

The Honorable Judd Gregg, Chairman
Senate Health, Education, Labor and Pensions Committee (HELP)
428 Dirksen Senate Office Building
Washington, DC 20510-6300

Dear Chairman Gregg and Members of the Senate HELP Committee,

On the eve of mark-up of genetic nondiscrimination legislation by the Senate Health, Education, Labor and Pensions Committee (HELP), we join the Genetic Alliance Board of Directors in urging you to work toward bipartisan legislation with strong, reasonable and enforceable protections.

Recent progress toward a Senate vote is encouraging after so many years of hearings, discussions and negotiations. However, we are also sobered by the fact that neither proposal, in our estimation, has the bipartisan support essential to successful passage on the Senate floor. Moreover, we are concerned that legislative proposals currently under discussion do not meet the standard of Genetic Alliance Nondiscrimination Principles:

The Genetic Alliance affirms that all personal medical information,
including family history, deserves strong and enforceable protections
against misuse in health insurance and employment. Genetic information is a
subset of medical information. Genetic information, and all medical
information, deserves strong and enforceable safeguards to protect the
rights, privacy and confidentiality of the individual and their family.
Enforcement and recourse should be the same for the misuse of all medical
information.

The Genetic Alliance¹s goal in supporting genetic nondiscrimination legislation is to reduce the likelihood of genetic information being misused in health insurance or employment decision-making. We join the Genetic Alliance in calling for movement, on both sides of the political aisle, towards a bipartisan bill that is more reflective of Genetic Alliance Nondiscrimination Principles and more likely to succeed on the Senate floor. We call for the vigorous discussion and constructive compromise, with respect to reasonable and meaningful enforcements, that this legislation deserves.
With April’s 50th anniversary of the discovery of the double helix, this is an exciting and hopeful time for genetics and health care in general. It is imperative, however, that we, the public, have strong assurances backed by strong enforcements so we can take full advantage of these new medical advances ­ advances that could actually prevent or control disease before it develops.

As biomedical research discovers more genes and creates new treatments and preventative therapies, more people will want to take genetic tests to get the health benefits of these medical advances. With the geometric explosion of genetic tests that is anticipated in the near future, many more people will be exposed to the risk of genetic information being used in health insurance and employment decision-making. We urgently request that you pass a strong genetic nondiscrimination bill that truly protects our families from that risk now and into the future. We must know that our personal genetic information will not be used in health insurance and employment decision-making.

Thank you for all your hard work and efforts on this critical issue. We recognize that you do not take the subject of genetic discrimination lightly. We also know that you appreciate that in the not too distant future these issues will definitely affect your very own family members, neighbors and colleagues. We look forward to continuing to work with you to promote bipartisan compromise that can lead to legislation that is more reflective of the strong, meaningful and reasonable enforcements that we citizens need and deserve.

Sincerely,

Sharon F. Terry, MA
President, Board of Directors Executive Director
Mary E. Davidson, MSW
President, PXE International, Inc. Genetic Alliance Washington, DC
Nancye W. Buelow, Vice President for Consumers
Past President, Alpha One Association, North Carolina
Diane L. Baker, MS, Vice President for Professionals
Past President, National Society of Genetic Counselors, Maryland
Vivian Ota Wang, PhD, Secretary
Professor, Vanderbilt University, Tennessee
Jannine D. Cody, PhD, Treasurer-Past President
Chromosome 18 Registry & Research Society, Texas
Donna Jean Appell, RN, Director at Large
Hermansky-Pudlak Syndrome Network, New York
Project DOCC, New York
Scott Berns, MD, MPH, Director at Large
Progeria Research Foundation, Massachusetts
Elliott D. Hillback, Jr., MBA, Director at Large
Senior Vice President, Corporate Affairs, Genzyme, Massachusetts
Paul E. Murphy, Director at Large
International Society for Mannosidosis & Related Diseases, Maryland
Loraine Oman-Ganes, MD, Director at Large
Chair, ASHG Education & Information Committee, Toronto, Canada
Victor B. Penchaszadeh, MD, MSPH, Director at Large
W.H.O. Collaborating Center for Community Genetics and Education
Beth Israel Medical Center, New York
Traci M. Powell, PhD, Director at Large
University of California at San Diego, California
Wendy Uhlmann, MS, CGC, Director at Large
Medical Genetics Clinic/University of Michigan

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Updated May 25, 2005