As evidenced by the endless reports of new discoveries in genetics and genomics over the past few decades, the public's views will substantially influence the uptake and use of these new applications for personal and societal benefit. Informed decision-making regarding the use of genomic applications will depend on public understanding of both basic scientific concepts and social implications to enable consideration of personally significant risks and benefits. Furthermore, informed publics are critical for the large population studies often required in genome sciences. A major player in public understanding and perception of science are researchers. By exploring public understanding and views of genome science research and technology, genome researchers will be better able to shape their messages and address public concerns, thereby building trust between the two groups. To meet this challenge, we are proposing a mixed strategy of researcher-community engagement through a partnership between the Duke Institute for Genome Sciences & Policy and the Museum of Life and Science in Durham, North Carolina. Utilizing a community forum approach, we will convene a series of forums by inviting students and adult family members from the 7th grade class of a local public middle school. Through a program of moderated small group discussion, we aim to engage the families in thoughtful dialogue alongside university researchers who have attended special training sessions in science communication and community partnership. Focusing on issues in genome sciences, we will evaluate the impact and feasibility of this approach for education and engagement of diverse publics regarding basic and biomedical research within the community setting. Using a series of pre-, post- and follow-up surveys, we will assess the impact of researcher training and community-researcher engagement on: (1) community perceptions/attitudes towards research and researchers, (2) community awareness of and interest in genome science research, (3) community ability to seek and interpret research data and genome science messages through public resources, (4) researcher awareness of community understanding and perceptions, and (5) researcher participation in community science and research engagement programs and activities. The outcomes of the evaluation will help inform the development of future community- researcher partner programs and serve as a launching point for further exploration and analysis of public understanding and attitudes of genome science research and technologies as well as other basic and biomedical arenas. As genetics and genomics research and clinical applications relevant to public health continue to expand, the success of these endeavors will depend on the support and participation of the public. Public understanding of issues important in genomics research and clinical applications will be critical to ensure respect for and protection of future research participants and the safe and appropriate use of new tests and interventions. Efforts to engage and educate the public through direct interaction with scientists will be critical to the promotion of public awareness and informed public deliberation of genomics issues in research and healthcare. ? ? ?
| Lajonchere, Clara M; Wheeler, Barbara Y; Valente, Thomas W et al. (2016) Strategies for Disseminating Information on Biomedical Research on Autism to Hispanic Parents. J Autism Dev Disord 46:1038-50 |
| Haga, Susanne B; Rosanbalm, Katie D; Boles, Larry et al. (2013) Promoting public awareness and engagement in genome sciences. J Genet Couns 22:508-16 |
| O'Daniel, Julianne M; Rosanbalm, Katie D; Boles, Larry et al. (2012) Enhancing geneticists' perspectives of the public through community engagement. Genet Med 14:243-9 |
