Genetics policy is receiving much attention in government, the media and in personal discussions. As we become more aware of the promise science has to offer, a corresponding dialogue to understand and process these breakthroughs is necessary. At the University of Michigan this objective was pursued via the "Genome Technology and Reproduction: Values and Public Policy" Project, supported by the NIH's National Human Genome Research Institute. The project conducted community dialogues throughout the state to ascertain public priorities regarding genetics, including discussion of which practices should be regulated or left to personal choice. An empirical arm of the project assessed existing legislation, case law and professional practice. This presentation offers analysis of the juncture of these two processes, specifically whether public preferences are matching the genetics-related legislation proposed at the state and national level.
Topics addressed in both the dialogues and legislation include genetic discrimination in employment and insurance, genetic privacy, public sponsorship of genetic counseling and testing, and access to reproductive technologies. In the dialogues, attention focused on classifying policy approaches into four areas: prohibitions, protections, promotions, and permissions. In general, the public preferred deference to professional standards. However, there was support for legislation of varying scope to address discrimination and privacy. Given the distinction between the public's wariness about legislating genetic and reproductive choice and the proliferation of such legislation, there seems to be some disconnect between policymakers and the public. It may be that legislators are over-reaching their mandate, or that the public remains uninformed about the necessity of governmental protections.
Learning Objectives: Evaluate the degree to which legislation on reproductive genetics addresses the priorities and values evidenced through community dialogue
Keywords: Reproductive Health, Policy/Policy Development
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: University of Michigan "Genome Technology and Reproduction: Values and Public Policy" Project
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: This project sponsored a fellowship for one summer of public interest employment.