Literature DB >> 23591403

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

Holly Etchegary1, Jane Green, Elizabeth Dicks, Daryl Pullman, Catherine Street, Patrick Parfrey.   

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.

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Year:  2013        PMID: 23591403      PMCID: PMC3831079          DOI: 10.1038/ejhg.2013.64

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  26 in total

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4.  The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise.

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Review 5.  Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease.

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Journal:  Genet Med       Date:  2003 Jul-Aug       Impact factor: 8.822

6.  Public experiences, knowledge and expectations about medical genetics and the use of genetic information.

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Journal:  Community Genet       Date:  2004

7.  A Community's Awareness and Perceptions of Genomic Medicine.

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Journal:  Public Health Genomics       Date:  2009-05-13       Impact factor: 2.000

8.  Genetics of common disease: a primary care priority aligned with a teachable moment?

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Journal:  Genet Med       Date:  2012-01-19       Impact factor: 8.822

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  14 in total

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4.  Consumer attitudes towards the establishment of a national Australian familial cancer research database by the Inherited Cancer Connect (ICCon) Partnership.

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Journal:  J Community Genet       Date:  2017-08-18

5.  Engaging a state: Facebook comments on a large population biobank.

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Journal:  J Community Genet       Date:  2017-04-05

6.  Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium.

Authors:  Davit Chokoshvili; Carmen Belmans; Roxanne Poncelet; Sofie Sanders; Deborah Vaes; Danya Vears; Sandra Janssens; Isabelle Huys; Pascal Borry
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7.  Exploring parents' attitudes towards a multicentre cohort study of children with burns injuries: A qualitative interview study.

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8.  Online discussion effects on intention to participate in genetic research: A longitudinal experimental study.

Authors:  Sojung Claire Kim; Joseph N Cappella; Vincent Price
Journal:  Psychol Health       Date:  2016-04-06

9.  Family Matters: The Nurse's Role in Assessing Family Health History in Ocular Disease.

Authors:  Frances M Peterson-Burch
Journal:  Insight       Date:  2018       Impact factor: 0.878

10.  Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study.

Authors:  Bettina Meiser; Melissa Monnik; Rachel Austin; Cassandra Nichols; Elisa Cops; Lucinda Salmon; Amanda B Spurdle; Finlay Macrae; Natalie Taylor; Nicholas Pachter; Paul James; Rajneesh Kaur
Journal:  J Community Genet       Date:  2021-11-02
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