Women and Genetics in Contemporary Society (WAGICS) Workshop

by Regina Kenen

On May 16, 1996, approximately sixty women gathered in Zanesville, Ohio to participate in a three day workshop entitled Women and Genetics in Contemporary Society (WAGICS), the first feminist conference funded by the Ethical, Legal and Social Implications (ELS1) of the National Center for Human Genome Research. This workshop was gestated almost single handedly by Becky Holmes, the motivating force behind the pioneering conference on Ethical Issues in Human Reproduction Technology: Analysis by Women held in 1979.

The workshop addressed issues arising from the Human Genome Project (HGP—The Human Genome Project is a 15 year 3 billion dollar scientific effort to map and sequence the entire human genome.) The workshop differed from the typical conference in terms of participation and process. In order to counter the usual hierarchical organization of most conferences, WAGICS was organized on the principles of fairness and democratic process. Each woman had an equal chance to participate and each woman's contributions were equally valued regardless of their status in their own profession or membership group.
The women came from diverse backgrounds, representing disability rights activists, African American and Latina groups, academic disciplines such as anthropology, sociology, biology, philosophy, medical genetics, political science, and practitioners—physicians and genetic counselors. They discussed feminist ethics and bioethics, past accomplishment  and future projects of the HGP, cross cultural perspectives, issues of concern to persons with disabilities, genetic testing and attempts to synthesize feminism and genetic counseling, cancer genetics and genetic susceptibility testing and behavior genetics.

As would be expected from a group of such diversity, many different women's voices were heard rather than one voice. There was concern about possible eugenic use of some of the findings which was weighed against possible medical benefits. Genes for cystic fibrosis, Huntington's Disease, some forms of hereditary breast and colon cancer, and a form of dwarfism have been found, and researchers are searching for genes for obesity, homosexuality, alcoholism,schizophrenia, manic-depression, and aggression. As of now, diagnosis is way ahead of treatment. Possible misuse of the technology as well as the implications of the physical, social, economic, and political environments interacting with genes were issues explored.
 

The main divisions among the participants centered around the role of the American capitalist system that is oppressive toward women in general, particularly women of color and those with disabilities. Some strongly believe that change could not occur by changing this system and that while working within the system might help individual women, it meant that women were being coopted into a structure that would harm women as a group in the long run. Some women from the disability and minority communities argued that genetic determism would be used as ammunition to devalue them.
Other participants agreed that the health care system and application of new genetic technology had problems but that it was beneficial for women to work within the system in order to change it and to ensure that women benefited from the new genetic knowledge. The majority of clinicians and scientists believed that feminist scientists and healthcare practitioners could act as bulwarks against abuse and could advocate for greater access for disenfranchised minorities.

Women attending the workshop wanted the dialogue to continue. Unfortunately, the funding agency only allocated 12% of the funds originally requested and cut proposed follow-up activities and publications.
 

Regina Kenen, Ph.D., M.P.H., is a professor of Sociology at Trenton State College and serves as liaison between the Council for Responsible Genetics and the Network.