Enhancing geneticists’ perspectives of the public through community engagement

Abstract

original research article Purpose: Given the rapid pace of genetic and genomic research and technology development, public engagement on scientific issues may be mutually beneficial to the research community and the general public. The public may benefit from a greater understanding of concepts and new applications, and researchers can build awareness of public knowledge, perceptions, and potential concerns about genomic research and applications. methods:We developed and piloted a public engagement program called Genome Diner to facilitate dialog between genetic/genomic researchers (n = 40) and middle school students (n = 76) and their parents (n = 83) from the local community. Program impact was assessed through pre-and post-Diner surveys for each group.Results: After participation in Genome Diner, researchers' views were positively affected regarding the (adult) public's level of understanding of genetic concepts, beliefs about relevance of research, and the importance of researcher-community interaction.conclusion: Through an interactive discussion with students and parents, researchers gained valuable insight into public perspectives about genome research. The engagement format of the Genome Diner program presents a novel method of fostering trust and relationships between the two groups and to inform both the public and the researchers, whose work may depend on public opinion and participation.Genet Med 2012:14(2):243-249

Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

“…Second, it is both essential and urgent that scientists forge partnerships with African American communities to map genomics research priorities, design policies for the ethical conduct of this emerging science, and guarantee equitable distribution of its discoveries. Reaching the full potential of a human genome revolution to advance knowledge about gene-environment interactions is dependent on ongoing cooperation between biomedical scientists, clinicians, and the public whom scientists are trying to reach (O'Daniel et al 2012;Royal and Dunston 2004). Third, the key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks and other genetics initiatives is to engage early and persistently with the community (O'Daniel et al 2012;Terry et al 2012).…”

“…Reaching the full potential of a human genome revolution to advance knowledge about gene-environment interactions is dependent on ongoing cooperation between biomedical scientists, clinicians, and the public whom scientists are trying to reach (O'Daniel et al 2012;Royal and Dunston 2004). Third, the key to building trust and overcoming African Americans' trepidation and resistance to participation in biobanks and other genetics initiatives is to engage early and persistently with the community (O'Daniel et al 2012;Terry et al 2012). Grassroots community partnerships based on transparency and mutual respect must be operative before the design stage of any research project through implementation and utilization of results.…”

Bringing personalized medicine to the community through public engagement

“…Focus groups Telephone survey, random digit dialing To gain in-depth knowledge of the social perceptions of the Quebec CARTaGENE project, a large-scale genetic database, and its approach Identification of attitudes towards those participating in the database; identification of key public concerns about the DNA database [40] Haddow et al To develop models of community engagement or to enhance existing models of public engagement and public participation; to develop and evaluate genetics education and public participation supportive materials for the community Education needs assessment; identification of cultural and other communities and local key issues to be explored in forums; genetics educational materials; mini-forums held in seven US locations [102] Nicols et al in a thoughtful dialog about genome science and related social issues alongside university researchers Report detailing public knowledge and attitudes about genetics research; identification of researchers' perceptions of parent participants' knowledge and attitudes, the value of public interaction and input, and researchers' own ability to successfully engage members of the community [49] Pullman et al…”

“…In particular, a mock jury trial was used to engage youth with social and ethical issues raised by a National DNA database. Other research devel oped a 'Genome Diner' community engage ment approach which brought together scien tific experts, as well as middle school children and their parents to deliberate genomebased research and applications [49]. The interactive discussions were held in school cafeterias and were arranged as a 'menu': appetizers (consist ing of warm up questions), main course (spe cific discussion topics) and dessert (summary of discussions from each table).…”

Don't Just Invite Us to the Table: Authentic Community Engagement

“…The community that will be most affected by this decision, the individuals who will undergo exome or genome sequencing, was not part of the dialogue. Much has been written in recent years about the need to engage individuals, families, and communities in decisions regarding genetics specifically (Etchegary et al, 2013;O'Daniel et al, 2012;Terry et al, 2012;Trinidad et al, 2010;Clayton et al, 2010) and health care in general (Walton-Moss et al, 2013;Silow-Carroll et al, 2013;Meetoo, 2013). There are many reasons for this, and they have been well described elsewhere (Malone et al, 2013;Cottler et al, 2013;Jagosh et al, 2012;Shore et al, 2011;Seifer and Gottlieb, 2010).…”