Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars’ Dissemination Practices and Translation Goals

References

• Ashcraft, L. E., D. A. Quinn, and R. C. Brownson. 2020. Strategies for effective dissemination of research to United States policymakers: A systematic review. Implementation Science 15 (1):89. doi:10.1186/s13012-020-01046-3.
   PubMed Web of Science ®Google Scholar
• Brown, A., C. Barnes, J. Byaruhanga, M. McLaughlin, R. K. Hodder, D. Booth, N. Nathan, R. Sutherland, and L. Wolfenden. 2020. Effectiveness of technology-enabled knowledge translation strategies in improving the use of research in public health: Systematic review. Journal of Medical Internet Research 22 (7): e17274. doi:10.2196/17274.
   PubMed Web of Science ®Google Scholar
• Burke, W., P. Appelbaum, L. Dame, P. Marshall, N. Press, R. Pyeritz, R. Sharp, and E. Juengst. 2015. The translational potential of research on the ethical, legal, and social implications of genomics. Genetics in Medicine 17 (1):12–20. doi:10.1038/gim.2014.74.
   PubMed Web of Science ®Google Scholar
• Caulfield, T., S. Chandrasekharan, Y. Joly, and R. Cook-Deegan. 2013. Harm, hype and evidence: ELSI research and policy guidance. Genome Medicine 5 (3):21. doi:10.1186/gm425.
   PubMedGoogle Scholar
• Clayton, E. W., A. M. Tritell, and A. M. Thorogood. 2023. Avoiding liability and other legal land mines in the evolving genomics landscape. Annual Review of Genomics and Human Genetics 24 (1):333–46. doi:10.1146/annurev-genom-100722-021725.
   PubMedGoogle Scholar
• Department of Health and Human Services. 2023. Center for ELSI Resources and Analysis (U24 Clinical Trial Not Allowed). Accessed January 10, 2024. https://grants.nih.gov/grants/guide/rfa-files/RFA-HG-23-027.html.
   Google Scholar
• Dolan, D. D., S. S.-J. Lee, and M. K. Cho. 2022. Three decades of ethical, legal, and social implications research: Looking back to chart a path forward. Cell Genomics 2 (7):100150. doi:10.1016/j.xgen.2022.100150.
   PubMedGoogle Scholar
• Gluckman, P. 2014. Policy: The art of science advice to government. Nature 507 (7491):163–5. doi:10.1038/507163a.
   PubMed Web of Science ®Google Scholar
• Gluckman, P. D., A. Bardsley, and M. Kaiser. 2021. Brokerage at the science–policy interface: From conceptual framework to practical guidance. Humanities and Social Sciences Communications 8 (1):1–10. doi:10.1057/s41599-021-00756-3.
   PubMedGoogle Scholar
• Hanna, K. E. 1995. The ethical, legal, and social implications program of the national center for human genome research: A missed opportunity? In Society’s choices: Social and ethical decision making in biomedicine, ed. Institute of Medicine (US) Committee on the Social and Ethical Impacts of Developments in Biomedicine, R. E. Bulger, B. E. Meyer, and H. V. Fineberg, 432–58. Washington, DC: National Academies Press. https://www.ncbi.nlm.nih.gov/books/NBK231976/.
   Google Scholar
• Lee, L. L., and M. Neff. 2004. How information technologies can help build and sustain an organization’s CoP: Spanning the socio-technical divide? In Knowledge networks: Innovation through communities of practice, ed. P. Hildreth and C. Kimble, 165–83. Hershey, PA: Idea Group, Inc. doi:10.4018/978-1-59140-200-8.ch015.
   Google Scholar
• Lemos, M. C., and B. J. Morehouse. 2005. The co-production of science and policy in integrated climate assessments. Global Environmental Change 15 (1):57–68. doi:10.1016/j.gloenvcha.2004.09.004.
   Web of Science ®Google Scholar
• Loncarevic, N., P. T. Andersen, A. Leppin, and M. Bertram. 2021. Policymakers’ research capacities, engagement, and use of research in public health policymaking. International Journal of Environmental Research and Public Health 18 (21):11014. doi:10.3390/ijerph182111014.
   PubMed Web of Science ®Google Scholar
• MacKillop, E., and J. Downe. 2023. Knowledge brokering organisations: A new way of governing evidence. Evidence & Policy 19 (1):22–41. doi:10.1332/174426421X16445093010411.
   Web of Science ®Google Scholar
• McCain, L. 2002. Informing technology policy decisions: The US Human Genome Project’s Ethical, Legal, and Social Implications programs as a critical case. Technology in Society 24 (1-2):111–32. doi:10.1016/S0160-791X(01)00048-3.
   Google Scholar
• Microsoft Corporation. 2018. Microsoft excel. Washington: Microsoft Corporation.
   Google Scholar
• Rycroft-Smith, L. 2022. Knowledge brokering to bridge the research-practice gap in education: Where are we now? Review of Education 10 (1):e3341. doi:10.1002/rev3.3341.
   Web of Science ®Google Scholar
• Stier, J., and S. E. Smit. 2021. Co-creation as an innovative setting to improve the uptake of scientific knowledge: Overcoming obstacles, understanding considerations and applying enablers to improve scientific impact in society. Journal of Innovation and Entrepreneurship 10 (1):35. doi:10.1186/s13731-021-00176-2.
   PubMedGoogle Scholar
• van der Weele, C. 2008. Moral agendas for genomics: How to find the blind spots? Configurations 16 (1):117–35. doi:10.1353/con.0.0042.
   Web of Science ®Google Scholar
• Ward, V., A. House, and S. Hamer. 2009. Developing a framework for transferring knowledge into action: A thematic analysis of the literature. Journal of Health Services Research & Policy 14 (3):156–64. doi:10.1258/jhsrp.2009.008120.
   PubMed Web of Science ®Google Scholar
• Weber, M., V. L. Armour, C. Lindstadt, and I. Yanovitzky. 2023. Testing multiple methods to effectively promote use of a knowledge portal to health policy makers: Quasi experimental evaluation. Journal of Medical Internet Research 25:e41997. doi:10.2196/41997.
   PubMed Web of Science ®Google Scholar
• Williams, P. 2002. The competent boundary spanner. Public Administration 80 (1):103–24. doi:10.1111/1467-9299.00296.
   Web of Science ®Google Scholar
• Yesley, M. S,. 2008. What’s ELSI got to do with it? Bioethics and the Human Genome Project. New Genetics and Society 27 (1):1–6. doi:10.1080/14636770701843527.
   Web of Science ®Google Scholar