Disability Studies and the Legacies of Eugenics

Institut Mensch, Ethik und Wissenschaft (IMEW)

Daily Account: July 7, 2004
Submitted by: Debjani Mukherjee, Center for the Study of Disability Ethics, Assistant Professor, Rehabilitation Institute of Chicago, Northwestern University

On the third day of our summer institute, we visited the Institut Mensch, Ethik und Wissenschaft (IMEW) in Berlin. The overwhelming impression I have of that day is a bit chaotic although the information presented and discussions were very important, particularly to the kind of work that I do.

The idea of the IMEW was conceived in 1998 and the center officially opened in March of 2002. According to the English version of the IMEW website (www.imew.de):

The principal task of the institute is interdisciplinary and independent research in the field of medical ethics. The institute concerns itself in particular with the problems of the disabled and chronically ill people as seen from their own standpoint as well as the impact of bioscience on society as a whole.
(http://www.imew.de/index.php/cat/72, cited August 9, 2004)

The institute serves as a link between “society” and “science.” Disability rights and self-help groups inform the projects and priorities of the center, giving it a unique role in bioethics in Germany (and in fact, the world).

We were welcomed to the IMEW by the director, Dr. Katrin Grubar, the information specialist/librarian, Barbara Schmelz, and a graduate student in Psychology (name?). We spent most of the day at the IMEW, taking a break for lunch at a restaurant several blocks from the institute.

Katrin Grubar introduced the center to us, giving us a history of its development and the need for a bioethics perspective that incorporates the perspectives of people with disabilities. Other topics covered included German historical perspectives, including the interesting fact that the term euthanasia is not typically used in German discourse around bioethics and end-of-life (an exception would be when referring to the Netherlands), Peter Singer’s invitation to Germany in 1989 and the activism that resulted against his views, the controversy around pre-implantation diagnosis (see www.imew.de for position papers about various ethical issues), and Dr. Grubar’s concerns about the renewed interest in eugenics, which she expressed while sharing with us the abstract for an upcoming German conference on “Eugenik und die Zukunft (eugenics and the future).” Barbara Schmelz introduced us to a project involving an ethics thesaurus in the life sciences, and shared with us some of the difficulties around incorporating disability studies terms and concepts. Our group shared their ideas as well as potential resources with the IMEW staff.

Sharon L. Snyder, Ph. D.,
Director, "Legacies of Eugenics" Summer Institute, Einstein Forum
Assistant Professor, Interdisciplinary Ph. D. Program in Disability Studies
Department of Disability and Human Development
University of Illinois at Chicago (MC 626)
1640 W. Roosevelt Rd. #207
Chicago IL 60608-6904 U.S.A.
E-mail: ssnyder@uic.edu Phone: (312) 413-1975 (Voice) Fax: (312) 996-0885