Joan Oppenheimer Weiss, ACSW

Joan Oppenheimer Weiss is a leader in the field of genetics and social work. During her extraordinary career, spanning nearly four decades, she has been a very effective advocate for individuals with genetic disorders and her work and contributions are on the leading edge of genetic research. A leading spokesperson for the role of advocacy and of social work in the growing field of genetic research and education, Ms. Weiss has provided numerous lectures and workshops in the United States and Europe and has published several books in the field of genetics and social work.

Ms. Weiss was the founder and first executive director of the Alliance of Genetic Support Groups, which later became Genetic Alliance. She also served as the co-director of the Human Genome Education Model (HuGEM) Project. HuGEM is an internationally recognized genetics education project for health professionals that seek to include consumers at all levels of policy, education, and research.

Ms. Weiss received a B.A. from Barnard College and a Masters in Social Work from Catholic University in Washington, D.C. Ms. Weiss’s career in genetics began at the Johns Hopkins Hospital where she was a Senior Social Worker in Genetics for over twenty years. Prior to this, Ms. Weiss was a caseworker at the Jewish Social Service Agency and Family and Child Services, both in Washington, DC. She has also been an instructor at Georgetown University Hospital, and an adjunct instructor in the Department of Social Work at Virginia Commonwealth University and the University of Vermont.

Working with the late Dr. Victor McKusick at Johns Hopkins, and with the support of the National Organization of Rare Disorders, March of Dimes, the Maternal and Child Health Bureau of HRSA, and a whole host of other individuals and organizations, Ms. Weiss founded Alliance of Genetic Support Groups (now Genetic Alliance) in 1986. The motivating force for the formation of Genetic Alliance for Joan O. Weiss was her son, Jonathan Weiss.

A number of national and regional genetic support groups, including the National Marfan Foundation and Neurofibromatosis, Inc., have honored Joan Weiss. She also received the Knee/Wittman NASW Health/Mental Health Outstanding Achievement Award in 1999 and is listed in Who’s Who of American Women: 2000-2001, and Who’s Who in America, 2001. She has published articles in a number of books and journals including the American Journal of Human Genetics, Journal of Genetic Counseling, Health and Social Work, and the American Journal of Medical Genetics. She was honored at the Genetic Alliance 10th, 20th and 25th anniversaries and Genetic Alliance staff collaborate with her on some of her projects.