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Working Group on Communicating Informed Consent to Individuals Who Are Deaf or Hard-of-Hearing: Participants

Participating Institutes

National Human Genome Research Institute, National Institute on Deafness and Other Communication Disorders, National Institute of Environmental Health Sciences, National Institute of General Medical Sciences.

Working Group Members

Nancy J. Bloch, Executive Director, National Association of the Deaf

Karen Emmorey, Ph.D., The Salk Institute of Biological Studies

Stephen Epstein, M.D., A.G. Bell Association of the Deaf **

Robert E. Johnson, Ph.D., Professor, Department of ASL, Linguistics, and Interpretation, Gallaudet University

John P. Madison, Ed.D. (co-chair), Department of English, National Technical Institute for the Deaf

Evelyn McClave, Ph.D., Department of English and Linguistics, California State University-Northridge

John Niparko, M.D., Professor in the Johns Hopkins School of Medicine and Director of The Listening Center, The Johns Hopkins Cochlear Implant Program

Brenda Schick, Ph.D., University of Colorado

Carolyn Stern, M.D., (co-chair) Marion B. Folsom Center/ Lifetime Health, Rochester, NY.

NIH Presenters/ Participants

Marin P. Allen, Ph.D., Chief, Office of Health Communication and Public Liaison, NIDCD

James F. Battey, Jr., M.D., Ph.D., Director, NIDCD

Amy Donahue, Ph.D., Chief, Hearing, Balance/Vestibular Sciences Branch, NIDCD

Gary B. Ellis, Ph.D., Director, Office for Protection from Research Risks, NIH

Thomas B. Friedman, Ph.D., NIDCD, Laboratory of Molecular Genetics, NIDCD

Benjamin Wilfond, M.D., Co-Director, Office of Bioethics and Special Populations Research, National Human Genome Research Institute

Patricia A. Kvochak, JD., Deputy Director, NIH Legal Advisor


Jamie-Lynne Huffman, Partnership Program Intern from Gallaudet University

Kelby N. Brick, Legal Counsel for Government Affairs, National Association of the Deaf

(Additional NIH and NIDCD Staff observed)

**Dr. Epstein was called away on an emergency and could not participate.

Last Updated Date: 
January 5, 2016