Genome
Technology & Reproduction:
Values & Public Policy
Project Summary | Focus Group Phase | Community Dialogue Phase
Policy Phase | Dissemination Phase | Advisory Sources | Funding
Genome Technology & Reproduction: Values & Public Policy, herein referred to as the Project, is a three year project for developing ethically grounded policy, professional, and institutional standards. Through a series of interrelated and interdependent phases, the Project identified values, attitudes and beliefs that citizens, patients, and practitioners hold toward genetic technology. Based on the insights and perspectives gained through a series of group processes described below, the Project developed recommendations/approaches for public policy and reproductive options. To address the difficulties that arise when issues of high technical and scientific complexity merge with issues involving emotionally charged ethical, moral, and religious views, the Project combined several different forms of group process: lay focus groups, community dialogues, policy meetings, and professional focus groups. Participation included representatives from different geographic and socio-economic groups among Michigan’s population. Return to top
The initial phase of the Project entailed the convening of focus groups to collect information from different segments of the general and professional populations. The focus groups identified value conflicts and concerns expressed by participants through discussions on advances in genetics and their impact on reproductive decision-making. Ideas and concerns identified during the focus groups served as raw data for the community dialogue phase of the project. Focus groups took place in the following Michigan cities: Ann Arbor/Ypsilanti, Detroit, Battle Creek, and Grand Rapids. Return to top
For this next phase of the Project, community dialogue groups met in Ann Arbor, Detroit, Grand Rapids, Holland, Kalamazoo, Lansing, and Saginaw-Bay City. Each group consisted of 30-50 community residents who agreed to meet twelve times over a period of one year. The objectives of the community dialogue phase were to: 1) educate large numbers of Michigan citizens about the reproductive option issues associated with genetic technologies; 2) open up community discussion about these issues, including those identified in the focus groups; and 3) allow community members to transform their moral and ethical concerns into a consensus on general values and policies pertaining to the issues discussed.
During this phase, the Project modeled rational democratic deliberation, a reflective and reasoned approach to civic dialogue about controversial moral and policy questions in our society. The twelve meetings were divided into two series (six sessions each). The first series was aimed at capturing moral/social value judgments while the second series tried to capture policy judgments. At the first meeting of each of the sessions, participants responded to case-based scenarios using computer key-pad technology that displayed instantaneous results as graphs. Return to topThis phase began with a one-day conference on March 17, 1997 in Ann Arbor, Michigan. The purpose of this conference was to link community dialogue participants with policy-makers in order to discuss public policy options based on information gathered during the first series of the Community Dialogues. Attendees were state legislators, health care professionals, health care industry leaders, and representatives from the community dialogues.
The main activity of this phase was the consolidation of the information acquired from the Focus Group and Community Dialogue Phases, as well as a thorough review of the existing and proposed legislation and analogous laws related to genetics issues. The Project investigators generated recommendations/approaches for governmental policies, professional standards, and institutional guidelines that reflected the values expressed by the communities in Michigan. The investigators not only referred back to the recorded outcomes of the first two phases, but they also actively involved the same community participants in a meeting convened to review and refine the recommendations. The resulting set of recommended policy approaches and professional/ institutional standards serve as a guide to the introduction and utilization of new genetic technologies related to reproductive decision-making. While the resulting policies and professional/ institutional standards are directed to the legislators, professional societies, and institutions in the State of Michigan, they will also serve as a model for other state and national groups. Return to topThe last phase comprises a national conference and the publications of the Project’s work. The conference, entitled Genome Horizons: Public Deliberations & Policy Pathways, was held in Washington, DC on May 15 -16, 1998. This conference shared the Project’s findings, conclusions, and recommendations/ approaches with a national group of policy-makers from three policy domains: legislators and legislative staff from the federal and state levels of government; leaders of professional organizations responsible for setting standards of practice; and leaders of the health care providers and insurance organizations. At this working conference, participants discussed comprehensive policy strategies and approaches in areas such as genetic privacy, access and financing, and the new reproductive technologies.
Publications coming from the Project will include both articles in academic journals and publications targeting policy-makers. In addition, a Conference Proceedings, containing texts of all principal presentations and summaries of the Panel discussion, question and answer sessions, and break-out sessions, will be distributed to conference participants and other policy leaders from the three main policy domains cited above. The Project Policy Report was also available. Return to topThe Council on Genetics & Society advised the project on issues of ethics, technology, religion, and broader issues involving the community and public relations. The Council’s discussions on reproductive decision-making led to the design and development of the NIH/ELSI grant.
An Expert Advisory Committee (EAC) of national experts in law, medicine, and policy met annually to provide broad oversight of the project, to evaluate its overall progress, and to ensure incorporation of the latest developments in the field. EAC members were available for telephone consultation during the entire period of the project and served as facilitators and panel members at the Genome Horizons Conference. Return to top
The National Institutes of Health, National Human Genome Research Institute - Ethical, Legal and Social Implications Branch granted the University of Michigan, with a subcontract to Michigan State University, $1,011,980 to conduct this project. Return to top
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Last updated 08/07/00
Copyright © 2000 Communities of Color & Genetics Policy Project