APPENDIX 1. INDIVIDUALS AND ORGANIZATIONS WHO PROVIDED COMMENTS TO THE TASK FORCE

The following individuals and the organizations they either represent or which they listed for identification purposes responded to the Task Force’s request for comments on its Interim Principles (distributed on request; Task Force’s website at http://www.med.jhu.edu/tfgtelsi) and/or on its Proposed Recommendations (Fed. Reg. 1997; 62:4539-4547; Task Force’s website). The list includes people who testified at the Task Force’s public hearing on its Interim Principles on April 30, 1996, and who submitted written comments on the Interim Principles, the Proposed Recommendations, or both.

Joann Adair, R.N.

Commonwealth of Pennsylvania

Department of Health

Nilofer Nina Ahmad, Ph.D.

Wills Eye Hospital

Leslie Alexandre, Dr. P.H.

OncorMed

William Audeh, M.D.

Cedars-Sinai Medical Center

Robert C. Baumiller

Xavier University

Deborah Blacker, M.D., Sc.D.

American Psychiatric Association

Ann Boldt, M.S., C.G.C.

National Society of Genetic Counselors

David T. Bonk

Bristol-Myers Squibb Company

Barbara A. Brenner

Breast Cancer Action

M. Desmond Burke

American Society of Clinical Pathologists

Peter H. Byers, M.D.

American Board of Medical Genetics

Michael Camilleri, M.D.

C. Christopher Hook, M.D.

Mayo Foundation

Robert C. Cefalo, M.D., Ph.D.

American Board of Obstetrics and

Gynecology

Ellen Wright Clayton

Vanderbilt University

Jordan J. Cohen, M.D.

Association of American Medical Colleges

Anne Marie Comeau, Ph.D.

New England Regional Newborn

Screening Program

Celeste M. Condit

The University of Georgia

Donald R. Coustan, M.D.

J.E. Ferguson

Society of Perinatal Obstetricians

Jo Linder-Crow, Ph.D.

American Psychological Association

Shelly Cummings

University of Chicago Medical Center

George C. Cunningham, M.D., M.P.H.

State of California - Health and Welfare

Agency

Mary E. Davidson

Joan Burns

Alliance of Genetic Support Groups

Barbara A. DeBuono, M.D., M.P.H.

State of New York, Dept. of Health

Laurence M. Demers, Ph.D.

American Association for Clinical

Chemistry, Inc.

Rochelle Diamond

National Organization of Gay & Lesbian

Scientists and Technical Professionals,

Incorporated

Joyce Dolcourt

Mountain States Regional Genetic Services

Network

Louis J. Elsas, II, M.D.

Council of Regional Network for Genetic

Services

Ray Erickson

Consumer

Carolyn D. Farrell, M.S., C.N.P., C.G.C.

Roswell Park Cancer Institute

James E. Ferguson, II, M.D.

Member of the Board, Society of Perinatal

Obstetricians

Donna G. B. Getz

Consumer

Lynn Godmilow

University of Pennsylvania School of

Medicine

Alan Goldhammer, Ph.D.

Biotechnology Industry Organization

Julian Gordon

Abbott Labs

Margaret L. Gulley, M.D.

Association for Molecular Pathology

Barbara Handelin, Ph.D.

Handelin Associates

Janet E. Haskell

Myriad Genetic Laboratories, Inc.

P. Hathaway, M.D.

M. C. Sullivan, R.N., J. D.

R. Flanigan, Ph.D.

The Midwest Bioethics Center

Elliott D. Hillback

Genzyme

Joseph Q. Jarvis, M.D.

Mountain State Regional Genetics Services

Network

John P. Johnson, M.D.

Mountain State Regional Genetics Services

Network

Haig H. Kazazian, M.D.

University of Pennsylvania

Charles Kull

Consumer

Lisa S. Lehmann, M.D.

Dana-Farber Cancer Institute

Bill Letson

State of Wyoming Department of Health

Sue Levi-Pearl

National Tourette Association

Allen Lichter, M.D.

American Society of Clinical Oncology

Casey Maddren

Consumer

Mary Mahowald

University of Chicago

Mamie Mals

Consumer

Edward R.B. McCabe, M.D., Ph.D.

University of California, Los Angeles

Robert W. McKenna, M.D.

American Society of Clinical Pathologists

Roberta B. Meyer

American Council of Life Insurance

Richard H. Miller, Jr.

Consumer

Ilana Mittman, M.S., C.G.C.

Sinai Hospital of Baltimore

Kathi Mooney, R.N., Ph.D.

Oncology Nursing Society

Ralph Nitkin

NIH-DOE National Coalition for Health

Professional Education in Genetics

Vicki Park, Ph.D.

University of Tennessee, Memphis

Kenneth A. Pass, Ph.D.

State of New York Department of Health

Frances A. Pitlick, Ph.D.

Biochemist

Beth A. Pletcher, M.D.

Franklin Desposito, M.D.

American Academy of Pediatrics

George Poste

Tadataka Yamada, M.D.

SmithKline Beecham Pharmaceuticals

Reed Edwin Pyeritz, M.D., Ph.D.

American College of Medical Genetics

Cathie S. Ragovin, M.D.

Massachusetts Breast Cancer Coalition

Pamela J. Reidy

Association of Women's Health

Obstetric and Neonatal Nurses

Margaret "Wendy" Ricker, Ed.D.

Consumer

David Rimoin, M.D., Ph.D.

American College of Medical Genetics

Allen Roses, M.D.

Duke University Medical Center

Mark A. Rothstein

University of Houston Law Center

Peter T. Rowley, M.D.

University of Rochester Medical Center

Lester B. Salans

Sandoz Pharmaceuticals Corporation

Jerry Schenken, M.D.

The Pathology Center

P. John Seward, M.D.

American Medical Association

Larry J. Shapiro, M.D.

The American Society of Human Genetics

Karen Snow, Ph.D.

Mayo Clinic

David A. Sobel, Ph.D.

Confidentiality Matters

Peter Somani, M.D., Ph.D.

Ohio Department of Health

Kathryn Sudduth, C.L.Sp.(C.G.)

Association of Cytogenetic Technologists

Herbert S. Waxman, M.D., F.A.C.P.

American College of Physicians

Joan O. Weiss, M.S.W.

Alliance of Genetic Support Groups

Benjamin S. Wilfond, M.D.

The University of Arizona Health Sciences

Center

Philip R. Wyatt, M.D., Ph.D.

North York General Hospital - Genetics

Raymond C. Zastrow, M.D.

College of American Pathologists

Stanley Zinberg, M.D., M.S., F.A.C.O.G.

The American College of Obstetricians &

Gynecologists