IMPACT OF THE HGI ON SOCIETY--A WOMEN'S STUDIES APPROACH

这个小组研究项目的目标是扩展分析

The objectives of this group research project are to extend the analysis of ethical and social questions raised by the Human Genome Initiative -- by utilizing insights and methodology recently developed in four new subfields of women's studies: feminist ethics/bioethics/science analysis/technology studies. The project will use these new approaches in an expressly collaborative methodology, to focus on hopes of, concerns of, needs of, and implications for women, especially by seeking and valuing input from potential end-users of HGI discoveries and from groups marginalized by society. An explicitly diverse group of 59 researchers (from clinical genetics, genetic counseling, genome research, women's health activism, minority health activism, the genetic consumer community, and some 11 academic disciplines) will meet in a three-day Workshop. In advance, each researcher will read a set of readings and prepare a specific contribution. The agenda will begin with a search for an ethical grounding of the discussions and with an updating of recent contributions to scientific knowledge and to society from mapping and sequencing the human genome. Following these topics, deliberations are planned to include forging of a partnership between genetic counseling and feminism; harmonizing prenatal diagnosis with empowerment of persons with disabilities; ways in which wishes needs and values of the disabled community can be incorporated into ELSI activities; women's responsibilities in predisposition genetics, especially cancer; applications of genome research that clearly benefit women; and new issues that come to the fore in 1995. Through egalitarian, horizontally oriented discussions participants will redefine questions, enumerate areas of agreement and areas requiring further exploration, distill issues of continuing concern, specify imperatives for research, and recommend specific ways to address women's concerns.