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.
The research in this proposed project will help inform community engagement projects for biobanks in Michigan and across the country through the conduct of a state-wide awareness campaign using a variety of techniques. With education, engagement, policy deliberation, and quantitative and qualitative research activities, we will be able to compare and contrast multiple methods to assess strategies for successful engagement of large populations.
|Spector-Bagdady, Kayte; De Vries, Raymond G; Gornick, Michele G et al. (2018) Encouraging Participation And Transparency In Biobank Research. Health Aff (Millwood) 37:1313-1320|
|Raj, Minakshi; Choi, Sung Won; Gurtekin, Tuba Suzer et al. (2018) Improving the Informed Consent Process in Hematopoietic Cell Transplantation: Patient, Caregiver, and Provider Perspectives. Biol Blood Marrow Transplant 24:156-162|
|Platt, Tevah; Platt, Jodyn; Thiel, Daniel et al. (2017) Engaging a state: Facebook comments on a large population biobank. J Community Genet 8:183-197|
|Platt, Tevah; Platt, Jodyn; Thiel, Daniel B et al. (2016) Facebook Advertising Across an Engagement Spectrum: A Case Example for Public Health Communication. JMIR Public Health Surveill 2:e27|
|Platt, J; Thiel, D B; Kardia, S L R et al. (2016) Innovating consent for pediatric HCT patients. Bone Marrow Transplant 51:885-8|
|Chalmers, Don; Nicol, Dianne; Kaye, Jane et al. (2016) Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC Med Ethics 17:39|
|Thiel, Daniel B; Platt, Jodyn; Platt, Tevah et al. (2015) Testing an online, dynamic consent portal for large population biobank research. Public Health Genomics 18:26-39|
|Solomon, Stephanie; Mongoven, Ann (2015) Extending the surrogacy analogy: applying the advance directive model to biobanks. Public Health Genomics 18:1-10|
|Thiel, Daniel B; Platt, Tevah; Platt, Jodyn et al. (2014) Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health. J Community Genet 5:125-38|
|Platt, Tevah; Platt, Jodyn; Thiel, Daniel B et al. (2014) 'Cool! and creepy': engaging with college student stakeholders in Michigan's biobank. J Community Genet 5:349-62|
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