title: Community engagement with genetics: public perceptions and expectations about genetics research.
abstract: BACKGROUND
  Knowledge of molecular biology and genomics continues to expand rapidly, promising numerous opportunities for improving health. However, a key aspect of the success of genomic medicine is related to public understanding and acceptance.
  
  
  METHODS
  Using community consultations and an online survey, we explored public attitudes and expectations about genomics research.
  
  
  RESULTS
  Thirty-three members of the general public in Newfoundland, Canada, took part in the community sessions, while 1024 Atlantic Canadians completed the online survey. Overall, many participants noted they lacked knowledge about genetics and associated research and took the opportunity to ask numerous questions throughout sessions. Participants were largely hopeful about genomics research in its capacity to improve health, not only for current residents, but also for future generations. However, they did not accept such research uncritically, and a variety of complex issues and questions arose during the community consultations and were reflected in survey responses.
  
  
  CONCLUSIONS
  With the proliferation of biobanks and the rapid pace of discoveries in genomics research, public support will be crucial to realize health improvements. If researchers can engage the public in regular, transparent dialogue, this two-way communication could allow greater understanding of the research process and the design of efficient and effective genetic health services, informed by the public that will use them.
authors: Clinical Epidemiology, Eastern Health, St. John's, NL, Canada.
authors: Holly
authors: H
authors: Etchegary
authors: Department of Genetics, Memorial University, St. John's, NL, Canada.
authors: Jane
authors: J
authors: Green
authors: Clinical Epidemiology, Memorial University, St. John's, NL, Canada.
authors: Patrick
authors: P
authors: Parfrey
authors: Population Therapeutics Research Group, Memorial University, St. John's, NL, Canada.
authors: Catherine
authors: C
authors: Street
authors: Division of Community Health, Memorial University, St. John's, NL, Canada.
authors: Daryl
authors: D
authors: Pullman
mesh_terms: D001294:Attitude to Health; D003256:Community Participation; D036281:Genetic Research / Q000941:ethics; D006801:Humans; D033181:Information Dissemination; D009523:Newfoundland and Labrador; D011639:Public Opinion; D011640:Public Policy; D011795:Surveys and Questionnaires
keywords: community consultation; genetics; genomics; public engagement
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