Linking Community Engagement Research to Public Health Biobank Practice

描述(由申请者提供)：2009年6月，密歇根州社区卫生部门正式启动了密歇根州健康生物信托基金，该基金将保存过去24年新生儿筛查中残留的血斑，并将其用于研究。全面实施后，大约400万个血迹和12个公共卫生登记处(如癌症登记处、医疗补助数据库等)将适用于生物医学和公共卫生研究。通过将血斑与登记信息联系起来，这项研究可能会带来预防和治疗疾病的临床工具和公共卫生干预措施。与此同时，扩大新生儿血斑筛查的公共卫生系统和政策影响是迫切需要的。这项拟议的研究旨在评估在一个影响公民整个生命过程的问题上进行真正全州范围内参与的多种方法，以帮助密歇根州和其他州让公民参与他们的研究倡议。拟议的项目有三个目标：第一，它是审查不同的参与和认识活动如何影响关于公共卫生生物库，特别是密歇根卫生生物信托的知识和信念。第二，理解主要在个人、社区或国家层面运作的参与方法在知识和信仰方面如何相互比较，以及它们是否可以整合在一起以增强彼此。第三，我们的目标是了解环境(社会、政治、文化和卫生系统)如何影响公共卫生生物库为个人、社区、国家和其他国家提出的问题。为了实现这些目标，我们提出了以下具体目标：目标1：通过与密歇根州立大学的推广服务和密歇根大学的基于社区的公共卫生网络的伙伴关系，利用三种不同的方法(在线网络资源、评议陪审团和大众媒体活动)创建一场全州范围的宣传活动，覆盖农村和城市社区。宣传活动将强调对公共卫生生物库的教育、参与和政策审议。目标2：通过全州范围的调查和定性访谈，评估这些在个人、社区和州一级运作和互动的活动作为向公众提供信息和参与的机制的相对有效性；目标3：通过对目标1和目标2中观察到的知识、态度、信念和行动的情景分析，全面了解影响个人、社区和州一级社区参与产生的关键问题的显著社会、政治、文化和公共卫生系统因素。对公共卫生、生物库和遗传学研究的国家和国际领导人以及密歇根社区组织的定性访谈将允许将公共反应与机构对集体利益和个人风险之间权衡的看法并列在一起。

DESCRIPTION (provided by applicant): In June 2009, the Michigan Department of Community Health formally launched the Michigan BioTrust for Health that will house the residual bloodspots from the last 24 years of newborn screening and make them available for research. When fully implemented, ~ 4 million bloodspots and 12 public health registries (e.g. cancer registries, Medicaid databases, etc.) will be marketable for biomedical and public health research. By linking the bloodspots with registry information, this research could lead to clinical tools and public health interventions that prevent and treat disease. At the same time, the public health system and policy implications of expanded use of newborn screening bloodspots are exigent. The proposed research seeks to assess multiple methods for conducting truly state-wide engagement on an issue that affects citizens throughout the lifecourse in order to assist Michigan and other states in engaging citizens in their research initiatives. The proposed project has three goals: First, it is to examine how different engagement and awareness activities impact knowledge and beliefs about public health biobanks, and the Michigan Biotrust for Health in particular. Second, it is to understand how methods of engagement that operate principally at the individual, community, or state levels compare with one another vis-¿-vis knowledge and beliefs and whether they might be integrated to enhance one another. And third, our goal is to understand how context (social, political, cultural, and health system) affects the issues that public health biobanks raise for individuals, communities, states, and other nations. To accomplish these goals, we propose the following specific aims: Aim 1: To create a state-wide awareness campaign utilizing three different approaches (online web resources, deliberative juries, and mass media campaigns) through partnerships with the Michigan State University's Extension Service and the University of Michigan's Community Based Public Health network that will reach rural and urban communities. The awareness campaign will emphasize education, engagement, and policy deliberation on public health biobanks. Aim 2: To evaluate, through a state-wide survey as well as qualitative interviews, the comparative effectiveness of these activities that operate and interact at the individual, community, and state levels as mechanisms for informing and engaging the public; and Aim 3: To develop a comprehensive understanding of the salient social, political, cultural and public health system factors influencing the key issues arising from community engagement at the individual, community, and state levels through contextualized analysis of the knowledge, attitudes, beliefs, and actions observed in Aims 1 and 2. Qualitative interviews with national and international leaders in public health, biobanks, and genetics research, as well as participating Michigan-based community organizations will allow a juxtaposition of public reactions versus institutional perceptions of the trade-offs between collective good and personal risk.