Consulting the community: public expectations and attitudes about genetics research
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 informati...
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ftpubmed:oai:pubmedcentral.nih.gov:3831079 2023-05-15T17:22:28+02:00 Consulting the community: public expectations and attitudes about genetics research Etchegary, Holly Green, Jane Dicks, Elizabeth Pullman, Daryl Street, Catherine Parfrey, Patrick 2013-12 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3831079 http://www.ncbi.nlm.nih.gov/pubmed/23591403 https://doi.org/10.1038/ejhg.2013.64 en eng Nature Publishing Group http://www.ncbi.nlm.nih.gov/pmc/articles/PMC http://www.ncbi.nlm.nih.gov/pubmed/23591403 http://dx.doi.org/10.1038/ejhg.2013.64 Copyright © 2013 Macmillan Publishers Limited Article Text 2013 ftpubmed https://doi.org/10.1038/ejhg.2013.64 2014-12-07T00:53:13Z 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. Text Newfoundland PubMed Central (PMC) Canada European Journal of Human Genetics 21 12 1338 1343 |
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Article Etchegary, Holly Green, Jane Dicks, Elizabeth Pullman, Daryl Street, Catherine Parfrey, Patrick Consulting the community: public expectations and attitudes about genetics research |
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description |
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. |
format |
Text |
author |
Etchegary, Holly Green, Jane Dicks, Elizabeth Pullman, Daryl Street, Catherine Parfrey, Patrick |
author_facet |
Etchegary, Holly Green, Jane Dicks, Elizabeth Pullman, Daryl Street, Catherine Parfrey, Patrick |
author_sort |
Etchegary, Holly |
title |
Consulting the community: public expectations and attitudes about genetics research |
title_short |
Consulting the community: public expectations and attitudes about genetics research |
title_full |
Consulting the community: public expectations and attitudes about genetics research |
title_fullStr |
Consulting the community: public expectations and attitudes about genetics research |
title_full_unstemmed |
Consulting the community: public expectations and attitudes about genetics research |
title_sort |
consulting the community: public expectations and attitudes about genetics research |
publisher |
Nature Publishing Group |
publishDate |
2013 |
url |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3831079 http://www.ncbi.nlm.nih.gov/pubmed/23591403 https://doi.org/10.1038/ejhg.2013.64 |
geographic |
Canada |
geographic_facet |
Canada |
genre |
Newfoundland |
genre_facet |
Newfoundland |
op_relation |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC http://www.ncbi.nlm.nih.gov/pubmed/23591403 http://dx.doi.org/10.1038/ejhg.2013.64 |
op_rights |
Copyright © 2013 Macmillan Publishers Limited |
op_doi |
https://doi.org/10.1038/ejhg.2013.64 |
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European Journal of Human Genetics |
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21 |
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12 |
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1338 |
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1343 |
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1766109147917451264 |