Public input in the development of federal genetic non-discrimination policy

We examine the extent of public participation and influence in the shaping of legislation that regulates the permissible uses of information related to genetic testing. We propose to investigate public views, definitions, and understandings of protection from genetic discrimination in health insurance and employment. We will analyze three sources of data: federal legislative (1998-2005) and Secretary's Advisory Committee on Genetics, Health and Society hearing testimony transcripts (2003-2005); media accounts on genetic discrimination (1995-2005); and interviews of key informants. We will analyze this qualitative data inductively, guided by the principles of grounded theory. We aim to: determine which members of the public are represented at public hearings and covered in media accounts; describe what issues are raised at federal hearings and interpreted and reported on by the media; examine the degree to which issues raised at public hearings and covered by the media effect changes in the text of legislation post hearings; and document consistency or variability in the key actors represented and/or core issues presented in various policy venues, such as the Senate versus House of Representatives versus the Secretary's Advisory Committee on Genetics, Health, and Society. The proposed research is relevant to public health because public input into the development and implementation of policy concerning genetic testing is central to public acceptance of genetic advances, as well as to the delineation of unacceptable uses. Such input should play an integral role in policy development and law-making in this area. Our research will shed an important light on this process of public input and influence. Moreover, our research will blaze new ground and lay the groundwork for studies in other areas where public participation represents a key component of an informed legislative process.