This presentation may provide a source of ideas on ways to increase public participation in complex public policy issues. The Secretary's Advisory Committee on Genetic Testing (SACGT) was chartered in 1998 to advise the Department of Health and Human Services (DHHS) on the medical, scientific, ethical, legal, and social issues raised by the development and use of genetic tests. The first specific task SACGT was charged by DHHS with addressing was the adequacy of oversight of genetic tests in consultation with the public. Because the safety and efficacy of genetic tests will affect a wide range individuals, SACGT made concerted efforts to gather broad-based public perspectives on oversight for genetic testing. SACGT employed several mechanisms for gathering public comment and assessing the status of prior debate about the issues surrounding oversight of genetic testing. A Federal Register notice, a targeted mailing to interested individuals and organizations, a web-based consultation, and a public meeting provided avenues for public participation. SACGT also commissioned a review of the scholarly literature on the topic. SACGT received nearly 400 comments via mail, email and fax and further input from approximately 200 participants in the public meeting. After developing preliminary recommendations on oversight, SACGT initiated a second request for public comment. The public's responsiveness was impressive, and the breadth of input helped strengthen and enrich SACGT's assessment of the adequacy of oversight of genetic tests.
Learning Objectives: N/A
Keywords: Genetics, Community Outreach
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: Member, Secretary's Advisory Committee on Genetic Testing