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  • 1. Genetic Information Nondiscrimation Sharon Terry, MA President & CEO, Genetic Alliance Chair, Coalition for Genetic Fairness
  • 2. Coalition of over 600 advocacy organizations Founded 1986 Increase the capacity of advocacy organizations so they can achieve their missions and leverage the voices of millions of individuals affected by genetic conditions © Genetic Alliance - no reprint without permission
  • 3. • Children's Hospital Genetics Center • Children's Hospital of the King's Daughters • Children's Liver Alliance • Children's Medical Center, The Genetics Center • Children's PKU Network • Chromosome 18 Registry & Research Society • Chromosome 22 Central • Chromosome 9p- Network • Chromosome Deletion Outreach • • Chronic Granulomatous Disease Association • Cleft Palate Foundation • Climb • Coalition for Heritable Disorders of Connective Tissue • Colorectal Cancer Network • Congenital Heart Anomalies-Support, Education & Research • Cooley's Anemia Foundation • Cornelia de Lange Syndrome Foundation • Council for Responsible Genetics • Craniofacial Foundation of America • Craniosynostosis and Parents Support • Cyclic Vomiting Syndrome Association • Cystic Fibrosis Foundation • Cystinosis Foundation • Cystinuria Support Network • Dandy-Walker Syndrome Network • Depression & Related Affective Disorders Association • Dianon Systems • Disorders of Chromosome 16 Foundation • DNA Dynamics • Dubowitz Syndrome Information and Parent Support • Duke University Medical Center • DuPage County Health Department • DysautonomiaFoundation, Inc.• Dystonia Medical Research Foundation • Dystrophic Epidermolysis Bullosa Research • Association of America • Ectodermal Dysplasia Support Group • Ehlers-Danlos National Foundation • EITAN - Israeli Union of Rare Disorders • Ellis-Van Creveld Support Group • Engelhorn Foundation for Rare Diseases • Erythropoietic Protoporphyria Research and Education Fund • Eunice Kennedy Shriver Center • Exceptional Parent Magazine • Facing Our Risk of Cancer Empowered • Familial Gastrointestinal Registry • Families of Spinal Muscular Atrophy • Family Empowerment Network • Family Support Network of North Carolina • Family Voices • Fanconi Anemia Research Fund • Ferguson Inherited Colorectal Cancer Registry • Ferre Institute - Genetic Counseling Program • FOD Family Support Group • 600 Advocacy Organizations © Genetic Alliance - no reprint without permission
  • 4. Footsteps Institute for Rare Diseases • Foundation Fighting Blindness • Foundation for Blood Research • Foundation for Ichthyosis & Related Skin Types • Foundation for Nager & Miller Syndromes • FRAXA Research Foundation • Freeman-Sheldon Parent Support Group • Friedreich's Ataxia Research Alliance • Gallaudet University • GeneClinics Medical Genetics Database • GeneCare Medical Genetics Center • Genetic Interest Group • Genzyme Genetics • Genetic Health • Genetic Research on Hereditary Hearing Loss • Genomic Health • Georgetown University Medical Center • Gilda Radner Familial Ovarian Cancer Registry • Glaucoma Research Foundation • GlaxoWellcome • Gluten Intolerance Group of North America • Goldenhar Syndrome Research & Information Fund • Greenberg Center for Skeletal Dysplasias • Greenwood Genetic Center • Ground Zero Pharmaceuticals • NBIA Disorders Association • Harvey Institute for Human Genetics • Hemochromatosis Foundation • Hereditary Cancer Program • Hereditary Colon Cancer Association • Hereditary Colon Cancer Newsletter & Webpage • Hereditary Disease Foundation • Hermansky-Pudlak Syndrome Network • HHT Foundation International • Human Growth Foundation • Huntington's Disease Society of America • Huntington's Disease Society of America - MD • Huntington's Disease Society of America - MI • Huntington's Disease Society of America - West PA • Hydrocephalus Association • Hydrocephalus Support Group • Hypertrophic Cardiomyopathy Association • Illinois Neurofibromatosis Inc • Immune Deficiency Foundation • Incyte Genomics • Indiana State Department of Health • Inherited High Cholesterol Foundation • Inherited Metabolic Diseases Clinic • Institute for Family-Centered Care • International Children's Anophthalmia Network • International Fibrodysplasia Ossificans Progressiva Association • International Joseph Diseases Foundation • International Mitochondrial Disease Network • www.myotonicdystrophy.com • Xeroderma Pigmentosum Society • XLH Network 1000 Diseases © Genetic Alliance - no reprint without permission
  • 5. International Organization of Glutaric Acidemia • International Patient Advocacy Association • International Rett Syndrome Association • International Society for Mannosidosis and Related Diseases • International Tremor Foundation • Intestinal Multiple Polyposis and Colorectal Cancer Foundation • Iron Disorders Institute • Johns Hopkins University-Center for Med. Genetics • Joubert Syndrome Foundation Corporation • Kaiser Permanente - Dept of Genetics • Kids with Heart National Association for Children’s Heart Disorders • Klinefelter Syndrome and Associates • Klippel-Trenaunay Support Group • Kniest Syndrome Group • Langer-Giedion Syndrome Association • Late Onset Tay-Sachs Foundation • Let's Face It • Little People of America • L.I. Program in Regional Genetics & Sickle Cell • Lowe Syndrome Association, Inc. • Lutheran General Children's Health Resource Center • MAGIC Foundation for Children's Growth • March of Dimes Birth Defects Foundation • Massachusetts Down Syndrome Congress • Medical College of Wisconsin • Mercy Medical Airlift • Michigan State University • Mid-Atlantic Regional Human Genetics Network • Moebius "Warriors" International • Mommies Enduring Neonatal Death • Montgomery Heart Foundation for Cardiomyopathy • Mountain States Regional Genetics Services Network • MSL Help • Multiple Sclerosis Association of America • MUMS National Parent-to-Parent Network • Mycosis Fungoides Foundation • Myotubular Myopathy Resource Group • Myriad Genetic Laboratories • Narcolepsy Network • National Alliance for the Mentally Ill • National Alopecia Areata Foundation • National Association for Pseudoxanthoma Elasticum • National Ataxia Foundation • National Center for Chromosome Inversions • National Center for Education in Maternal & Child Health • National Coalition for Cancer Survivorship • National Coalition for PKU & Allied Disorders • Y-ME National Breast Cancer • 14 Million Affected Individuals © Genetic Alliance - no reprint without permission
  • 6. National Deaf Education Network and Clearinghouse • National Down Syndrome Congress • National Down Syndrome Society • National Foundation for Ectodermal Dysplasias • National Foundation for Facial Reconstruction • National Foundation for Jewish Genetic Diseases • National Fragile X Foundation • National Gaucher Foundation • National Genealogical Society • National Healthy Mothers, Healthy Babies Coalition • National Hemophilia Foundation • National Incontinentia Pigmenti Foundation • National Lymphedema Network • National Marden Walker Organization • National Marfan Foundation • National MPS Society • National Neurofibromatosis Foundation • National Niemann-Pick Disease Foundation • National Org. for Albinism and Hypopigmentation • • National Parent Network on Disabilities • National Parent to Parent Support & Information System • National Psoriasis Foundation • National Society of Genetic Counselors • National Tay-Sachs & Allied Diseases Association • National Tuberous Sclerosis Association • National Urea Cycle Disorders Foundation • National Vitiligo Foundation • Nebraska Newborn Screening/ Genetics • Nephrogenic Diabetes Insipidus Foundation • New Jersey Self Help Clearinghouse • NF and Neurogenetics Clinic, MGH • Neurofibromatosis Inc. • Neurogenetics Clinic • NKH International Family Network • NYU Medical Center - Human Genetics Prgm. • Office of Rare Diseases, NIH • Organic Acidemia Association • Osteogenesis Imperfecta Foundation • Ovarian Cancer National Alliance • Oxalosis and Hyperoxaluria Foundation • Pacific Northwest Regional Genetics Group • Pacific Southwest Regional Genetics Network • Parent Assistance Committee on Down Syndrome • Parents and Researchers Interested in Smith-Magenis Syndrome – PRISMS • Parents Helping Parents • Parents of Galactosemic Children, Inc. • Ped. Adolescent Gastroesophageal Reflux Assoc. • VHL Family Alliance • Virginia Breast Cancer Foundation • Vision World Wide • All 50 States & International © Genetic Alliance - no reprint without permission
  • 7. Pediatric Associates • Pediatric Neurotransmitter Disease Association • Periodic Paralysis Association • Peter's Anomaly Online Support Group • PhRMA • Pierre Robin Network • Pilot Parent Partnerships • Polycystic Kidney Research Foundation • Prader-Willi Syndrome Association • Progressive Osseous Heteroplasia Association • Project DOCC--Delivery of Chronic Care • Proteus Syndrome Foundation • Public Responsibility in Medicine & Research • PXE International • Research!America • Restless Legs Syndrome Foundation • Rockford Memorial Hospital • Rubinstein-Taybi Parent Group USA • Share and Care Cockayne Syndrome Network • Shwachman-Diamond Syndrome International • Sickle Cell Association, TX Gulf Coast • Sickle Cell Disease Association of America, East NC • Sjogren's Syndrome Foundation • SmithKline Beecham • Society for Alstrôm Syndrome Families • Sotos Syndrome Support Association • Southeastern Regional Genetics Group • Special Needs Advocate for Parents • Spina Bifida Assoc. of Lancaster County • St. Joseph Perinatal Center • Stickler Involved People • Sturge-Weber Foundation • Sudden Arrhythmia Death Syndromes Foundation • Support Organization for Trisomy 18, 13 and Related Disorders • Tennessee Department of Health • Texas Department of Health • Texas Neurofibromatosis Foundation • Texas Regional Genetics Network • The ARC • The Noonan Syndrome Support Group • The Prune Belly Syndrome Network • The Queen's Medical Center • Thomas Jefferson University Hospital • Tourette Syndrome Association • Treacher Collins Foundation • Trisomy 9 International Parent Support • Turner's Syndrome Society of the US • Tyler for Life Foundation • United Leukodystrophy Foundation • University of Arkansas for Medical Sciences • University of Michigan - Pediatric Genetics • University of Oklahoma Health Science Center - Department of Pediatrics • Valley Children's Hospital • Velo-Cardio-Facial Syndrome Education Foundation • Velo-Cardio-Facial Syndrome Research Institute Largest Provider of Genetic Services © Genetic Alliance - no reprint without permission
  • 8. Why Worry About Protecting Genetic Information?
  • 9. Consumer/Advocate Perspective
    • Perspective  Vision
    © Genetic Alliance - no reprint without permission Onset of symptoms Health outcome Misdiagnosis Diagnosis Linkage Studies Proteomics Gene Discovery Regulomics Case Histories Cohort Aggregation Natural History Clinical Trials Drug Development Regulatory Treatment Funding Basic Science Animal Studies Funding
  • 10. What Matters? Improved Health Outcome
  • 11. Translational Expectations © Genetic Alliance - no reprint without permission
  • 12.
    • Innovation Access
    • Medicare Reform
    • Reimbursement
    • Lab Services
    • FDA Regulations
    • Adaptive Trials
    • Disease Priorities
    • Discrimination in Insurance and Employment
    Policy Issues www.geneticfairness.org © Genetic Alliance - no reprint without permission
  • 13. Coalition for Genetic Fairness Founded Spring 1997 Settlement against Burlington Northern Santa Fe Railway April 18, 2001 H.R. 602: Slaughter S.318: Daschle S.1995: Snowe 2001 Clinton endorses H.R. 306 July 1997 Senate Committee of Labor and Human Resources hearing Genetic Alliance testifies May 21, 1998 Daschle, Harkin, Dodd and Kennedy: S.1322 Slaughter: H.R.2457 July 1999 Clinton Executive Order 13145: To Prohibit Discrimination in Federal Employment February 8,2000 Senate Committee on Health, Education, Labor and Pensions hearing on Genetic Discrimination in Employment GA testifies July 20, 2000 SACGT Committee letter to Congress supporting S. 1322 and H.R. 2457 August 2000 H.R. 1910: Slaughter S. 1053: Kennedy 2003 Department of Labor Report Genetic Information and the Workplace, January 20, 1997 NIH-DOE ELSI National Action Plan on Breast Cancer workshop on genetic discrimination in employment 1996 Genetic Alliance Science: Genetic Discrimination: Perspectives of Consumers, October 25, 1996 Slaughter: H.R.306 Snowe: S.543 1997
  • 14. 109 Congress
    • :: February 16th: President Bush – full support – Statement of Administrative Policy.
 
    • :: February 17th: S.306 passed Senate – unanimous vote of 98-0.
 
    • :: March 10th: H.R.1227 was introduced and referred to the Committees on Energy and Commerce, Education and Workforce, and Ways and Means.
 
    • :: Today: H.R.1227 has 148 total sponsors (90 Democrats, 57 Republicans, and 1 Independent)
  • 15.
    • No one.
    • But… opponents say:
      • No need for the law
      • Current law adequately addresses issues
        • 48%, 54%, 66% - fear discrimination
      • Frivilious lawsuits will abound
        • 36 states w/legislation, no lawsuits
      • It will be expensive to comply
        • The analysis cost more than the bill will cost
    So Who Supports Discrimination?
  • 16. What can we do?
    • Support Congresswoman Judy Biggert (R-IL) and the other co-sponsors: Eshoo, Ney and Slaughter in getting Republican co-sponsors
    • Contact committee chairs - Boehner (BBVVN) and Barton (MJGI)
    • Recruit companies to meet with the Chamber of Commerce and National Association of Manufacturers
  • 17. Join the Coalition for Genetic Fairness
    • 20th Century Fox
    • Affymetrix, Inc.
    • Alpha-1 Association
    • Alpha-1 Foundation
    • American Academy of Family Physicians
    • American Academy of Pediatrics
    • American Association for the Advancement of Science
    • American Association of People with Disabilities
    • American Cancer Society
    • American College of Medical Genetics
    • American Health Information Management Association
    • American Jewish Congress
    • American Medical Student Association
    • American Occupational Therapy Association
    • American Osteopathic Association
    • American Society of Clinical Oncology
    • American Society of Human Genetics
    • Angelman Syndrome Foundation
    • Angioma Alliance
    • The Arc and United Cerebral Palsy Disability Policy Collaboration
    • ARPKD/CHF Alliance
    • Association for Molecular Pathology
    • Association of American Medical Colleges
    • Association of Women's Health, Obstetric and Neonatal Nurses"
    • Basal Cell Carcinoma Nevus Syndrome Life Support Network
    • Birt Hogg Dube Family Alliance
    • Boston Jewish Women's Coalition on Breast Cancer
    • Canavan Foundation
    • Cancer Information & Support Network, Inc.
    • CARES Foundation, Inc. [Congenital Adrenal Hyperplasia Research, Education & Support]
    • Caring Voice Coalition
    • The Center for Macular Degeneration at the University of Iowa
    • Children's Cardiomyopathy Foundation
    • Chromosome 18 Registry & Research Society
    • Citizens for Quality Sickle Cell Care
    • Coalition for Heritable Disorders of Connective Tissue
    • Coalition for Pulmonary Fibrosis
    • Cystic Fibrosis Foundation
    • Debra of America
    • DNA Direct
    • Families of Spinal Muscular Atrophy
    • Ferre Institute, Inc.
    • Fight ALD
    • First Genetic Trust
    • FORCE: Facing Our Risk of Cancer Empowered
    • Foundation for Children with Atypical HUS
    • Foundation for Ichthyosis and Related Skin Types, Inc.
    • Genetic Alliance
    • Genomic Health, Inc
    • Genzyme Genetics
    • Hadassah, The Women's Zionist Organization of America
    • Health and Medicine Counsel of Washington
    • Hemophilia Federation of America
    • Hereditary Disease Foundation
    • Hereditary Hemorrhagic Telangiectasia Foundation International, Inc.
    • Hermansky-Pudlak Syndrome Network, Inc.
    • Hunter's Hope Foundation
    • IEEE-USA
    • Inflammatory Skin Disease Institute
    • International Essential Tremor Foundation
    • International Premature Ovarian Failure Support Group, Inc.
    • International Society of Nurses in Genetics, Inc.
    • J. C. Venter Science Foundation
    • Jeffrey Modell Foundation
    • Jewish Federation of Metropolitan Chicago
    • Klinefelter Syndrome & Associates
    • March of Dimes
    • Maryland Patient Advocacy Group
    • Matthew's Mission
    • Millennium Pharmaceuticals
    • Mycosis Fungoides Foundation
    • myDNA Media
    • Myriad Genetics Laboratories, Inc.
    • National Alopecia Areata Foundation
    • National Association of Social Workers, Inc"
    • National Coalition for Health Care Professional Education in Genetics
    • National Eczema Association for Science and Education
    • National Foundation for Ectodermal Dysplasias
    • National Marfan Foundation
    • National Organization for Rare Disorders
    • National Partnership for Women and Families
    • National Psoriasis Foundation
    • National Society of Genetic Counselors
    • National Tay-Sachs & Allied Diseases Association, Inc.
    • National Workrights Institute
    • NERGG, Inc
    • PA Breast Cancer Coalition
    • Pachyonychia Congenita Project
    • Parent Project Muscular Dystrophy
    • Pediatric Neurotransmitter Disease Association
    • Periodic Paralysis Association
    • Prevention Genetics
    • Progeria Research Foundation
    • Project DOCC - Delivery of Chronic Care
    • PXE International
    • Quest Diagnostics Nichols Inst.
    • Religious Action Center of Reform Judaism
    • Rett Syndrome Research Foundation
    • Sjögren's Syndrome Foundation, Inc.
    • Society for Women's Health Research
    • Spina Bifida Association of America
    • STAR (Supporting Those At Risk) Foundation
    • Sudden Arrhythmia Death Syndromes Foundation
    • Translational Genomics Research Institute (TGen)
    • United Leukodystrophy Foundation, Inc.
    • United States Costello Syndrome Family Network
    • VHL Family Alliance
    • The Women's Public Policy Task Force of UJA-Federation of NY
    • XLH Network
    • Zeta Phi Beta National Education Foundation