The broad objectives of this project are to determine the impact of the human genome project (HGP) on women, to examine whether this impact meets standards of fairness or gender justice, and to identify ways of avoiding or reducing the possibility of unfairness or gender injustice in the formulation of institutional and social policies.
Our specific aims i nclude the development of a common core of scientific, psychosocial, legal, and ethical knowledge regarding the impact, or probable impact, of the HGP on women; identification of criteria against which the possibility of gender justice may be measured; application of these criteria to three areas of research: cystic fibrosis, sickle cell disease, and breast cancer; determination of an agenda for future research; public education concerning impact of HGP on women; and development of recommendations by which gender justice may be preserved or promoted by HGP research and its applications. The project consists of 4 phases, plus an educational component. PHASE 1: An information gathering period. Through literature research, discussion with appropriate experts, and consideration of data already available, we will develop a common fund of relevant knowledge from multiple disciplines. PHASE 2: The ethical analysis phase includes 2 parts. First is an examination of the question of the meaning and implication of gender justice, and application of this analysis to the information generated in Phase 1. Second is a case-based analysis of cystic fibrosis, sickle cell anemia, and breast cancer as examples of diseases on which the HGP will impact, relating the gender issues raised to ethical precedents or paradigms involving justice in other cases. PHASE 3: The policy development phase. We will develop proposals for insuring that applications of the HGP, and priorities for future research, be responsive to the issues of gender justice identified in Phases 1 and 2. PUBLIC EDUCATION/PARTICIPATION COMPONENT Relevant experts will serve as consultants and offer public lectures; a national conference will present material generated by the project. PHASE 4: Preparation of project summary, conference presentations, and recommendations for dissemination to public and academic audience.
Mahowald, M B (1997) The Human Genome Project and women. Womens Health Issues 7:204-5 |
Ravin, A J; Mahowald, M B; Stocking, C B (1997) Genes or gestation? Attitudes of women and men about biologic ties to children. J Womens Health 6:639-47 |
Mahowald, M B; Levinson, D; Cassel, C (1996) The new genetics and women. Milbank Q 74:239-83 |
Mahowald, M B (1996) A feminist standpoint for genetics. J Clin Ethics 7:333-40 |