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

该小组研究项目的目标是扩展分析 人类基因组计划提出的伦理和社会问题-- 通过利用最近在四个新的 妇女研究的子领域：女权主义伦理学/生物伦理学/科学 分析/技术研究。该项目将使用这些新方法 以一种明确的协作方法，专注于希望、关切 对妇女的、对妇女的需要和对妇女的影响，尤指通过寻求和 评估来自HGI发现的潜在最终用户和小组的投入 被社会边缘化。 一个由59名研究人员组成的明显不同的小组(来自临床遗传学， 遗传咨询、基因组研究、妇女健康行动主义、少数群体 健康激进主义，基因消费者社区，以及大约11名学者 学科)将在为期三天的研讨会上会面。 事先，每位研究人员将阅读一组读数，并准备一份 具体贡献。议程将从寻找一种道德的 为讨论奠定基础，并更新最近提交的材料 从测绘和排序到科学知识和社会 人类基因组。在这些主题之后，计划进行审议，以 包括在遗传咨询和女权主义之间建立伙伴关系； 使产前诊断与赋予有以下疾病的人权力相协调 残疾人的愿望、需要和价值观的方式 社区可纳入ELSI活动；妇女的 负责遗传易感性，尤其是癌症； 明显有益于女性的基因组研究的应用；以及新的 1995年出现的问题。 通过平等的、横向的讨论，参与者将 重新定义问题，列举达成一致的领域和需要 进一步探索，提炼出持续关注的问题，具体说明 研究的必要性，并建议解决妇女问题的具体方法 担忧。

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.