Consulting the community: public expectations and attitudes about genetics research.

Etchegary H, Green J, Dicks E, Pullman D, Street C, Parfrey P.

Source

1] Clinical Epidemiology, Faculty of Medicine, Memorial University, St John's, Newfoundland and Labrador, Canada [2] Eastern Health, St John's, Newfoundland and Labrador, Canada.

Abstract

Genomic discoveries and technologies promise numerous opportunities for improving health. Key to these potential health improvements, however, are health-care consumers' understanding and acceptance of these new developments. We identified community groups and invited them to a public information-consultation session in order to explore public awareness, perception and expectations about genetics and genomics research. One hundred and four members of seven community groups in Newfoundland, Canada took part in the community sessions. Content analysis of participant comments revealed they were largely hopeful about genetics research in its capacity to improve health; however, they did not accept such research uncritically. Complex issues arose during the community consultations, including the place of genetics in primary care, the value of genetics for personal health, and concerns about access to and uses of genetic information. Participants unequivocally endorsed the value of public engagement with these issues. The rapid pace of discoveries in genomics research offers exciting opportunities to improve population health. However, public support will be crucial to realize health improvements. Our findings suggest that regular, transparent dialog between researchers and the public could allow a greater understanding of the research process, as well as assist in the design of efficient and effective genetic health services, informed by the public that will use them.European Journal of Human Genetics advance online publication, 17 April 2013; doi:10.1038/ejhg.2013.64.