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



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Assessing Genetic Risks: Implications for Health and Social Policy 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

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Assessing Genetic Risks: Implications for Health and Social Policy 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

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Assessing Genetic Risks: Implications for Health and Social Policy 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

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Assessing Genetic Risks: Implications for Health and Social Policy 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

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Assessing Genetic Risks: Implications for Health and Social Policy 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

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Assessing Genetic Risks: Implications for Health and Social Policy 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

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Assessing Genetic Risks: Implications for Health and Social Policy 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

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Assessing Genetic Risks: Implications for Health and Social Policy 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