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Assessing Genetic Risks: Implications for Health and Social Policy (1994)

Chapter: Appendix A: Workshop Participants

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Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
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APPENDIX A

Workshop Participants

PARTICIPANTS IN THE FEBRUARY 1992 WORKSHOP ON LABORATORY ISSUES IN GENETICS

Arthur Beaudet, M.D. Institute of Molecular Genetics Baylor College of Medicine One Baylor Plaza, T-619 Houston, TX 77030

David Blumenthal, M.D. Medical Practices Evaluation Center Massachusetts General Hospital 50 Staniford Street Boston, MA 02114

Jessica Davis, M.D. President, Council of Regional Networks Cornell University Medical Center Genetics Box 3 1300 York Avenue New York, NY 10021

Wayne Grody, M.D., Ph.D. UCLA School of Medicine Assistant Professor Divisions of Medical Genetics and Molecular Pathology Los Angeles, CA 90024-1732

Frits Hommes, Ph.D. Voluntary National Biochemical Genetics Laboratory Proficiency Testing Program Professor, Department of Biochemistry and Molecular Biology, Medical College of Georgia 1120 Fifteenth Street Augusta, GA 30912

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×

Thaddeus Kelly, M.D., Ph.D. Vice Chair American Board of Medical Genetics Division of Human Genetics University of Virginia Hospital Charlottesville, VA 22908

Katherine Klinger, Ph.D. Vice President for Science Integrated Genetics, Inc. 31 New York Avenue Framingham, MA 01701

George Knight, Ph.D. Foundation for Blood Research P.O. Box 190 Scarborough, ME 04070

Karla Matteson, Ph.D. Director, Human Development and Genetics Center University of Tennessee Medical Center 1924 Alcon Highway Knoxville, TN 37920

Douglas McQuilken Vice President for Business Development Roche Molecular Systems, Inc. 340 Kingsland Street Nutley, NJ 07110

F. John Meaney, Ph.D. Office of Risk Assessment and Investigation Division of Disease Prevention Services Arizona Department of Health Services 3008 N. 3rd Street, Suite 101 Phoenix, AZ 85012

Patricia Murphy, Ph.D. Director, DNA Diagnostic Laboratory Laboratory of Human Genetics State of New York Department of Health Wadsworth Center for Laboratories and Research Empire State Plaza Albany, NY 12201-0509

Deborah Nickerson, Ph.D. Division of Biology, 139-74 California Institute of Technology Pasadena, CA 91125

Seymour Perry, M.D. Chair Department of Family and Community Medicine Georgetown University School of Medicine 215 Kober-Cogan Building 3750 Reservoir Road Washington, DC 20007

Hope Punnett, Ph.D. ASHG Committee on Genetic Services St. Christopher's Children's Hospital Front and Erie Streets Philadelphia, PA 19134

Max Rabinowitz, M.D. Division of Clinical Laboratory Devices Office of Device Evaluation, Food and Drug Administration 1390 Piccard Drive Rockville, MD 20850

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×

William Seltzer, Ph.D. Director DNA Diagnostic Laboratory Assistant Professor, Pediatrics and Biochemistry, Biophysics and Genetics Department of Pediatrics, Box C233 University of Colorado Health Sciences Center Denver, CO 80262

Joseph Shulman, M.D. President, Genetics and IVF Institute 3020 Javier Road Fairfax, VA 22031

Paul Silverman, Ph.D. Director of Scientific Affairs Beckman Instruments, Inc. 2500 Harbor Boulevard D-14-E Fullerton, CA 92634-3100

Michael Watson, Ph.D. American College of Medical Genetics Director of Clinical Cytogenetics St. Louis Children's Hospital 400 South Kingshighway Boulevard St. Louis, MO 63110

Victor W. Weedn, M.D., J.D. Major, U.S. Army Medical Corps DNA Identification Laboratory Armed Forces Institute of Pathology Washington, DC 20306-6000

Ann Willey, Ph.D. Director Laboratory of Human Genetics Wadsworth Center for Laboratories Research New York State Department of Health P.0. Box 509 Albany, NY 12201-0509

PARTICIPANTS IN THE JUNE 1992 WORKSHOP ON ISSUES IN GENETIC SERVICES

Barbara Adam Chief CDC Infant Screening Quality Assurance Laboratory 1600 Clifton Road Atlanta, GA 30333

Paul R. Billings, M.D., Ph.D. Chief Division of Genetic Medicine Department of Medicine Pacific Presbyterian Medical Center San Francisco, CA 94120

Alta Charo, J.D. Assistant Professor, Law and Medical Ethics University of Wisconsin 308 Law Building Madison, WI 53706

Ellen Wright Clayton, M.D., J.D. Assistant Professor of Pediatrics and Law Vanderbilt University School of Law Nashville, TN 37240

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×

Barbara Crandall, M.D. University of California-Los Angeles Medical Center Mental Retardation Unit 760 Westwood Plaza Los Angeles, CA 90024

George Cunningham, M.D., M.P.H. Chief, Genetic Disease Branch California Department of Health Services 2151 Berkeley Way (Annex Four) Berkeley, CA 94704-1011

Mark Evans, M.D. Director Division of Reproductive Genetics Wayne State University School of Medicine Department of Obstetrics and Gynecology 4707 St. Antoine Boulevard Detroit, MI 48201

Stephen Friend, M.D. MGH Cancer Center Building 149, 13th Street Charlestown, MA 02129

Patricia A. Gabow, M.D. Deputy Manager Medical Affairs Denver General Hospital 777 Bannock Street Denver, CO 80202-4507

Elena Gates, M.D. Assistant Clinical Professor Department of Obstetrics and Gynecology University of California-San Francisco 505 Parnassus Avenue-Box 0132 San Francisco, CA 94143

Michael R. Hayden, Ph.D., FRCPC Associate Professor of Medical Genetics and Director, Adult Genetics Clinic University of British Columbia 2211 Westbrook Mall, Room F-185 Vancouver, BC, Canada V6T 2B5

Claude LaBerge, Ph.D., FRCPC President Quebec Network of Genetic Medicine CHUL Department of Genetic Medicine 2705 Laurier Boulevard, Room 9355 Ste. Foy, Quebec, Canada G1V4G2

Sue Levi-Pearl Liaison, Medical and Scientific Programs Tourette Syndrome Association, Inc. 42-40 Bell Boulevard Bayside, NY 11361-2861

Abby Lippman, Ph.D. Associate Professor, Department of Epidemiology and Biostatistics McGill University Montreal, Quebec, Canada H3A1A2

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×

Edward McCabe, M.D., Ph.D. Baylor College of Medicine Institute for Molecular Genetics Room S-921 Texas Medical Center Houston, TX 77030

Gloria Petersen, M.D. Assistant Professor of Epidemiology Johns Hopkins University School of Public Health and Hygiene 615 N. Wolfe Street Baltimore, MD 21205

Nancy Press, Ph.D. Assistant Research Anthropologist Department of Psychiatry/Behavioral Sciences Medical Center, University of California-L.A. 760 Westwood Plaza Los Angeles, CA 90024

Neil J. Risch, Ph.D. Yale University School of Medicine Department of Epidemiology/Public Health 60 College Street, PO Box 3333 New Haven, CN 06510

Barbara Katz Rothman, Ph.D. Professor Department of Sociology Baruch College, City University of New York 17 Lexington Avenue New York, NY 10010

Janet Rowley, M.D. Professor Departments of Medicine and Molecular Genetics and Cell Biology The University of Chicago 5841 South Maryland Avenue, Box 420 Chicago, IL 60637

Margery Shaw, M.D., J.D. 2617 Pine Tree Drive Evansville, IN 47711

Elizabeth Thomson, R.N., M.S. Coordinator Iowa Statewide Genetic Counseling Services Coordinator, Cystic Fibrosis Pilot Project Consortium (National Center for Human Genome Research) Division of Medical Genetics Department of Pediatrics University Hospitals and Clinics Iowa City, IA 52242

Barbara Faye Waxman 8883 Pico Boulevard Los Angeles, CA 90035

Dorothy Wertz, Ph.D. Social Science, Ethics, and Law Program Shriver Center for Mental Retardation 200 Trapelo Road Waltham, MA 02254

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×

PARTICIPANTS IN THE SEPTEMBER 1992 MINI-WORKSHOPS ON GENETIC COUNSELING; PUBLIC EDUCATION; PRIVACY AND INSURANCE

Ruby Bishop President-Elect Alliance of Genetic Support Groups 7101 W. 12th, Suite 401 Little Rock, AR 72204

Troy Duster, Ph.D. Director Institute for the Study of Social Change University of California/Berkeley 2420 Bowditch Street Berkeley, CA 94720

John Fanning, J.D. Office of Health Policy and Evaluation Office of the Assistant Secretary for Health Department of Health and Human Services 200 Independence Avenue SW, Room 740G Washington, DC 20201

Robert Gellman, J.D. Chief Counsel Subcommittee on Government Information, Justice, and Agriculture House Committee on Government Operations Washington, DC 20515-6147

Betsy Gettig, M.S. President-Elect National Society of Genetic Counselors Director of Genetic Counseling West Penn Hospital School of Nursing 2nd Floor, Room 205 Pittsburgh, PA 15224

David Micklos Director DNA Learning Center Cold Spring Harbor Laboratory Cold Spring Harbor, NY 11724

Walter Nance, M.D., Ph.D. Department of Medical Genetics Medical College of Virginia Box 33, MCV Station Richmond, VA 23298

Madison Powers, J.D. Kennedy Institute of Bioethics Georgetown University 209 Poulton Hall Washington, DC 20057

Virginia Proud, M.D. Laboratory of Medical Genetics University of Alabama at Birmingham Byrd Building 323, UAB Station Birmingham, AL 35294

Kimberly Quaid, Ph.D. Department of Medical Genetics Indiana University School of Medicine 975 West Walnut Street Indianapolis, IN 46202-5251

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×

Elizabeth Thomson, R.N., M.S. Coordinator Iowa Statewide Genetic Counseling Services Coordinator, Cystic Fibrosis Pilot Project Consortium (National Center for Human Genome Research) Division of Medical Genetics Department of Pediatrics University Hospitals and Clinics Iowa City, IA 52242

Michael Yesley, J.D. Los Alamos National Laboratory Department of Energy M5 A187, P.O. Box 1663 Los Alamos, NM 87545

PARTICIPANTS IN THE SEPTEMBER 1992 PUBLIC FORUM ON ASSESSING GENETIC RISKS: ISSUES AND IMPLICATIONS FOR HEALTH

Judith L. Benkendorf, M.S. Genetic Counselor and Assistant Professor Division of Genetics Department of Obstetrics and Gynecology Georgetown University Medical Center Washington, D.C. 20007

Ruby Bishop President-Elect Alliance of Genetic Support Groups 7101 W. 12th, Suite 401 Little Rock, AR 72204

Hope Charkins, M.S.W. Executive Director Treacher Collins Foundation P.O. Box 683 Norwich, VT 05055

Elizabeth Fain 2765 Stockwood Drive Gastonia, NC 28056 Penelope Fischer 983 1st Place Longwood, FL 32750

Helen Bequaert Holmes Center for Genetics, Ethics and Women 24 Berkshire Terrace Amherst, MA 01002

Edward M. Kloza, M.S. President National Society of Genetic Counselors, Inc. 233 Canterbury Drive Wallingford, PA 19086

Sue Levi-Pearl Liaison for Medical and Scientific Programs Tourette Syndrome Association, Inc. 42-40 Bell Boulevard Bayside, NY 11361

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×

Abbey S. Meyers Executive Director National Organization for Rare Disorders, Inc. 100 Route 37, P.O. Box 8923 New Fairfield, CT 06812-1783

C. Ben Mitchell, M.Div. Director of Biomedical and Life Issues The Christian Life Commission of the Southern Baptist Convention 901 Commerce Street, Suite 550 P.O. Box 25266 Nashville, TN 37202-5266

Theresa E. Morelli 200 Fernwood Road, Apt. 22 Wintersville, OH 43952

Marsha Saxton, J.D. Project on Women and Disabilities 1 Ashburton Place, Room 130 Boston, MA 02108

Dorothy C. Wertz, Ph.D. Social Science, Ethics and Law The Shriver Center 200 Trapelo Road Waltham, MA 02254

Nachama Wilker Executive Director The Council for Responsible Genetics 19 Garden Street Cambridge, MA 02138-3622

Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 309
Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 310
Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 311
Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 312
Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 313
Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 314
Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 315
Suggested Citation:"Appendix A: Workshop Participants." Institute of Medicine. 1994. Assessing Genetic Risks: Implications for Health and Social Policy. Washington, DC: The National Academies Press. doi: 10.17226/2057.
×
Page 316
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Assessing Genetic Risks: Implications for Health and Social Policy Get This Book
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Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening.

Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered:

  • Quality control in genetic testing.
  • Appropriate roles for public agencies, private health practitioners, and laboratories.
  • Value-neutral education and counseling for persons considering testing.
  • Use of test results in insurance, employment, and other settings.
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