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

描述（由申请人提供）：我们研究公众参与和影响立法的程度，以规范与基因检测相关的信息的允许使用。我们建议调查公众对健康保险和就业中免受基因歧视的看法、定义和理解。我们将分析三个数据来源：联邦立法（1998-2005年）和遗传、健康和社会秘书咨询委员会听证会证词记录（2003-2005年）；关于基因歧视的媒体报道（1995-2005年）；以及对关键线人的采访。我们将在扎根理论的原则指导下归纳分析这些定性数据。我们的目标是：确定哪些公众代表出席公听会并被媒体报道；描述在联邦听证会上提出的问题以及媒体对这些问题的解释和报道；审查在公听会上提出并被媒体报道的问题在多大程度上影响公听会后立法文本的变化；并记录在各种政策场所（如参议院与众议院与遗传、健康和社会秘书咨询委员会）所代表的关键行动者和/或提出的核心问题的一致性或可变性。拟议的研究与公共卫生有关，因为公众对基因检测政策的制定和实施的投入是公众接受遗传进展的关键，也是划定不可接受用途的关键。这种投入应在这一领域的政策制定和立法中发挥不可或缺的作用。我们的研究将对这一公众投入和影响的过程提供重要的启示。此外，我们的研究将开辟新的领域，并为其他领域的研究奠定基础，在这些领域，公众参与是知情立法过程的关键组成部分。

DESCRIPTION (provided by applicant): 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.