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.
Similar content being viewed by others
Log in or create a free account to read this content
Gain free access to this article, as well as selected content from this journal and more on nature.com
or
References
Burke W, Burton H, Hall A et al: Extending the reach of public health genomics: what should be the agenda for public health in an era of genome-based and ‘personalized’ medicine? Genet Med 2010; 12: 785–791.
Snyderman R, Dinan M : Improving health by taking it personally. JAMA 2010; 303: 363–364.
Khoury M : Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease. Genet Med 2003; 5: 261–268.
McBride C, Bowen D, Brody L et al: Future health applications of genomics: priorities for communication, behavioral and social sciences research. Am J Prevent Med 2010; 38: 556–565.
Hahn S, Letvak S, Powell K et al: A community’s awareness and perceptions of genomic medicine. Public Health Genomics 2010; 13: 63–71.
Caufield T, Knoppers B Consent, privacy and research biobanks. Policy Brief No. 1 Genome Canada. March 2010 http://www.genomecanada.ca/medias/pdf/en/GPS-Policy-Directions-Brief.pdf.
Lemke A, Wolf W, Herbert-Beirne J, Smith M : Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 2010; 13: 368–377.
O’Doherty K, Hawkins A : Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics 2010; 13: 197–206.
Daudelin G, Lehoux P, Abelson J, Denis J : The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise. Health Expect 2010; 14: 261–271.
Rahman P, Jones A, Curtis J et al: The Newfoundland population: a unique resource for genetic investigation of complex diseases. Hum Mol Genet 2007; 12: R67–R172.
Green R, Green J, Buehler S et al: Very high incidence of familial colorectal cancer in Newfoundland: a comparison with Ontario and 13 other population-based studies. Fam Cancer 2007; 6: 53–62.
Merner N, Hodgkinson K, Haywood A et al: Arrhythmogenic right ventricular cardiomyopathy type 5 (ARVD5) is a fully penetrant, lethal arrhythmic disorder caused by a missense mutation in the TMEM43 gene. Am J Hum Genet 2008; 82: 80–821.
Sandelowski M : Whatever happened to qualitative description? Res Nurs Health 2000; 23: 334–340.
Pope C, Ziebland S, Mays N : Analysing qualitative data. BMJ 2000; 320: 114–116.
Etchegary H, Cappelli M, Potter B et al: Attitude and knowledge about genetics and genetic testing. Public Health Genomics 2010; 13: 80–88.
Jallinoja P, Aro A : Does knowledge make a difference? The association between knowledge about genes and attitude towards gene tests. J Health Comm 2000; 5: 29–39.
Cunningham-Burley S : Public knowledge and public trust. Comm Genet 2006; 9: 204–210.
Henneman L, Timmermans D, van der Wal G : Public experience, knowledge and expectations about medical genetics and the use of genetic information. Comm Genet 2004; 7: 33–43.
Godard B, Marshall J, Laberge C : Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project. Comm Genet 2007; 10: 147–158.
Feero W : Genetics of common disease: a primary care priority aligned with a teachable moment? Genet Med 2008; 10: 81–82.
Miller F, Carroll J, Wilson B et al: The primary care physician role in cancer genetics: a qualitative study of patient experience. Fam Pract 2010; 5: 563–569.
Carroll J, Brown J, Blaine S et al: Genetic susceptibility to cancer. Family physicians’ experience. Can Fam Physician 2003; 49: 45–52.
Suther S, Goodson P : Barriers to the provision of genetic services by primary care physicians: a systematic review of the literature. Genet Med 2003; 5: 70–76.
Burton H, Adams M, Bunton R, Schroder-Back P : Developing stakeholder involvement in introducing pubic health genomics into public policy. Public Health Genomics 2009; 12: 11–19.
Daudelin G, Lehoux P, Abelson J, Denis J : The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise. Health Expect 2010; 14: 261–271.
Lemke A, Wu J, Waudby C et al: Community engagement in biobanking: experiences from the eMERGE network. Genomics Soc Policy 2010; 6: 35–52.
Anderson C, Stackhouse R, Shaw A, Iredale R : The National DNA database on trial: engaging young people in South Wales with genetics. Public Underst Sci 2011; 20: 146–162.
Dove E, Joly Y, Knopper B : Power to the people: a wiki-governance model for biobanks. Genome Biol 2012; 13: 158–172.
O’Daniel J, Rosanbalm R, Boles L et al: Enhancing geneticists’ perspectives of the public through community engagement. Genet Med 2012; 14: 243–249.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Competing interests
The authors declare no conflict of interest.
Rights and permissions
About this article
Cite this article
Etchegary, H., Green, J., Dicks, E. et al. Consulting the community: public expectations and attitudes about genetics research. Eur J Hum Genet 21, 1338–1343 (2013). https://doi.org/10.1038/ejhg.2013.64
Received:
Revised:
Accepted:
Published:
Issue date:
DOI: https://doi.org/10.1038/ejhg.2013.64
Keywords
This article is cited by
-
“There should be one spot that you can go:” BRCA mutation carriers’ perspectives on cancer risk management and a hereditary cancer registry
Journal of Community Genetics (2023)
-
Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study
Journal of Community Genetics (2022)
-
Public attitudes towards the genetic testing in Georgia
Journal of Community Genetics (2021)
-
Clinical genomic testing: what matters to key stakeholders?
European Journal of Human Genetics (2020)
-
Knowledge and views about genetics: a public-based cross-sectional study
European Journal of Human Genetics (2020)
