Coalition for Genetic Fairness Sign-On Letter Urging Support for S. 1053, the Genetic Information Nondiscrimination Act (11/4/2003)
Speaker Dennis Hastert House 232 Capitol Building United States House of Representatives Washington, DC 20515 Dear Speaker Hastert:
On behalf of the Coalition for Genetic Fairness, the undersigned organizations, representing patients, people with disabilities, consumers, women, health and health professional and civil rights organizations and many others, we urge you to schedule immediate House action on S. 1053, the ""Genetic Information Nondiscrimination Act."" After years of hard work, the Senate passed S. 1053 on a nearly unanimous vote. In strong support of this bipartisan legislation Senator Frist stated on the floor that, ""? [I]f unchecked, the fear of genetic discrimination would have the potential of keeping people from participating in very useful research studies. As we greet the future, as we look at new technology, this is just one example of this body acting proactively, acting preemptively, so that such potential use in a discriminatory fashion of medical advances is kept from hurting the American people. We must take care to protect our body politic, and this legislation does just that."" Genetic testing can improve our lives by providing information on how we can prevent future health problems, and cope more effectively with unavoidable conditions. But the ability to predict disease through genetic testing and family history opens the door for genetic discrimination, particularly in employment and health insurance. We ask you to schedule a vote on S. 1053 before the end of this year. If you need additional information please contact Vanessa Lopes at the National Partnership for Women & Families at (202) 986-2600. We look forward to continuing to work with you so that we can ensure individuals and families have the rights they need and deserve and we can recoup the investment that we have made in mapping the human genome. Sincerely, National Partnership for Women & Families Alpha 1 Advocacy Alliance Alpha-1 Association Caring Voice Coalition, Inc. Alpha-1 Foundation American Academy of Family Physicians American Academy of Pediatrics American Association for Clinical Chemistry American Association for the Study of Liver Diseases American Association of Medical Colleges American Association of People with Disabilities American Cancer Society American Civil Liberties Union American College of Medical Genetics American Diabetes Association American Jewish Congress American Nurses Association American Psychiatric Association American Public Health Association American Sickle Cell Anemia Association Association of Women's Health, Obstetrics and Neonatal Nurses (AWHONN) Autosomal Recessive Polycystic Kidney Disease & Congenital Hepatic Fibrosis Alliance Birt Hogg Dube Family Alliance B'nai B'rith International Breast Cancer Resource Committee, Inc. Canavan Foundation Cancer Awareness Program Services, Inc. Cancer Research and Prevention Foundation Cardiac Arrhythmias Research & Education Foundation CARES Foundation, Inc. (Congenital Adrenal Hyperplasia Research, Education, and Support) Center for Patient Advocacy Central Conference of American Rabbis Coalition of Heritable Disorders of Connective Tissue Cooley's Anemia Foundation Cornelia de Lange Syndrome Foundation Crohn's and Colitis Foundation of America Cure FD (Familial Dysautonomia) Foundation Cystic Fibrosis Foundation Cystinosis, Research Network, Inc. Digestive Disease National Coalition Dystonia Medical Research Foundation Easter Seals Epilepsy Foundation Federation of American Societies for Experimental Biology FORCE: Facing Our Risk of Cancer Empowered Freeman-Sheldon Parent Support Group Genetic Alliance Gluten Intolerance Group Hadassah, the Women's Zionist Organization of America Hemophilia Federation of America Hermansky-Pudlak Syndrome Network, Inc. Hunters Hope Foundation IDEAS (IsoDicentric 15 Exchange, Advocacy & Support) Immune Deficiency Foundation Incontinentia Pigmenti International Foundation Jeffrey Modell Foundation Juvenile Diabetes Research Foundation K-T Support Group Late Onset Tay-Sachs Foundation March of Dimes National Association of Protection and Advocacy Systems National Association of Social Workers National Ataxia Foundation National Marfan Foundation National Niemann-Pick Disease Foundation, Inc. National Organization for Rare Disorders (NORD) National Ovarian Cancer Coalition National Society of Genetic Counselors National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) National Women's Health Network National Women's Law Center Oncology Nursing Society Ovarian Cancer National Alliance Pediatric/Adolescent Gastroesophageal Reflux Association, Inc - PAGER Pulmonary Hypertension Association PXE International Sjogren's Syndrome Foundation Spina Bifada Association of America Spondylitis Association of America STAR Foundation Support) Susan G. Komen Breast Cancer Foundation The Arc of the United States The Arc of Utah The Dysautonomia Foundation National Foundation for Ectodermal Dysplasias The Foundation for Nager and Miller Syndromes The National Workrights Institute The Society for Women's Health Research The Society of Gynecologic Oncologists Tourette's Syndrome Association Trisomy 18 Support Foundation Tuberous Sclerosis Alliance UJA - Federation of New York Women's Public Policy Task Force Union of American Hebrew Congregations United Cerebral Palsy VHL Family Alliance
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