from GeneWatch 26-5
Nov-Dec 2013

The Council for Responsible Genetics is saddened by the passing of Adrienne Asch on November 19. A former member of the CRG Board of Directors, Adrienne was most recently director of the Center for Ethics at Yeshiva University and the Edward and Robin Milstein Professor of Bioethics as well as professor of epidemiology and population health and family and social medicine at Albert Einstein College of Medicine.

A pioneer in disability studies, Adrienne was always trying to change the all too frequent belief that disability was tragedy rather than just another aspect of human life and maintained that the rights of disabled women should be as much a feminist concern as those of able-bodied ones.

Her work was devoted to the ethical, political, psychological, and social implications of human reproduction and the family. She produced tremendous scholarship that stood at the nexus of bioethics, disability studies, reproductive rights and feminist theory. Her publications include two volumes of which she was a co-editor: Women with Disabilities: Essays in Psychology, Culture, and Politics (1988, with Michelle Fine) and Prenatal Testing and Disability Rights (2000, with Erik Parens).

Adrienne was fiercely committed to defending the rights of all human beings, particularly the rights of children with disabilities and opposed the use of prenatal testing and abortion to select children free of disabilities.  As she wrote in one of her frequent contributions to GeneWatch:

My moral opposition to prenatal testing and selective abortion flows from the conviction that life with disability is worthwhile and the belief that a just society must appreciate and nurture the lives of all people, whatever the endowments they receive in the natural lottery. I hold these beliefs because there is abundant evidence that people with disabilities can thrive even in this less than welcoming society. Moreover, people with disabilities do not merely take from others, they contribute as well-to families, to friends, to the economy. They contribute neither in spite of nor because of their disabilities, but because along with their disabilities come other characteristics of personality, talent, and humanity that render people with disabilities full members of the human and moral community.

When recently asked what she saw as the most pressing bioethical problem today, Adrienne responded:

There isn't enough social justice discussion in bioethics, whether it's about healthcare or about the equality of all people with their different characteristics. I'm looking for a society that respects the uniqueness and the contributions of every individual, and the capacity of each individual to contribute according to their abilities ... and to be provided for according to their needs. And that's an old socialist-Marxist notion, but it's the society I'm interested in creating. And I'd like a bioethics along with a feminism that was interested in creating that. I think that's out of fashion but that's really what I'm looking for.

Her sharp mind and her love of ideas will be sorely missed by her friends and colleagues.

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