Consulting the community: Public expectations and attitudes about genetics research

European Journal of Human Genetics

Volumn 21, Issue 12, 2013, Pages 1338-1343

  Etchegary, Holly ^a,b   Green, Jane ^a   Dicks, Elizabeth ^a   Pullman, Daryl ^a   Street, Catherine ^a   Parfrey, Patrick ^a  

^a MEMORIAL UNIVERSITY OF NEWFOUNDLAND   (Canada)

^b Eastern Health Canada   (Canada)

Author keywords

attitudes; community engagement; consultation; public

Indexed keywords

ADULT; ARTICLE; ATTITUDE; AWARENESS; CANADA; CONSULTATION; CONSUMER HEALTH INFORMATION; EXPECTATION; FEMALE; GENETICS; GENOMICS; HEALTH SERVICE; HUMAN; MALE; PRIMARY MEDICAL CARE; PRIORITY JOURNAL;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; ATTITUDE; CANADA; DELIVERY OF HEALTH CARE; FEMALE; GENETIC SERVICES; GENETICS; HUMANS; MALE; MIDDLE AGED; PRIMARY HEALTH CARE; REFERRAL AND CONSULTATION; RESEARCH PERSONNEL; YOUNG ADULT;

EID: 84887620261     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2013.64     Document Type: Article

References (30)

1. 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.
2. Snyderman R, Dinan M: Improving health by taking it personally. JAMA 2010; 303: 363-364.
3. 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.
4. 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.
5. Hahn S, Letvak S, Powell K et al: A community's awareness and perceptions of genomic medicine. Public Health Genomics 2010; 13: 63-71.
6. Caufield T, Knoppers B: Consent, privacy and research biobanks. Policy Brief No.
7. Genome Canada. March 2010. http://www.genomecanada.ca/medias/pdf/en/ GPSPolicy- Directions-Brief.pdf
8. 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.
9. 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.
10. 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.
11. 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.
12. 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.
13. 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.
14. Sandelowski M: Whatever happened to qualitative description? Res Nurs Health 2000; 23: 334-340.
15. Pope C, Ziebland S, Mays N: Analysing qualitative data. BMJ 2000; 320: 114-116.
16. Etchegary H, Cappelli M, Potter B et al: Attitude and knowledge about genetics and genetic testing. Public Health Genomics 2010; 13: 80-88.
17. 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.
18. Cunningham-Burley S: Public knowledge and public trust. Comm Genet 2006; 9: 204-210.
19. 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.
20. 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.
21. Feero W: Genetics of common disease: a primary care priority aligned with a teachable moment? Genet Med 2008; 10: 81-82.
22. 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.
23. Carroll J, Brown J, Blaine S et al: Genetic susceptibility to cancer. Family physicians' experience. Can Fam Physician 2003; 49: 45-52.
24. 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.
25. 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.
26. 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.
27. Lemke A, Wu J, Waudby C et al: Community engagement in biobanking: experiences from the eMERGE network. Genomics Soc Policy 2010; 6: 35-52.
28. 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.
29. Dove E, Joly Y, Knopper B: Power to the people: a wiki-governance model for biobanks. Genome Biol 2012; 13: 158-172.
30. O'Daniel J, Rosanbalm R, Boles L et al: Enhancing geneticists' perspectives of the public through community engagement. Genet Med 2012; 14: 243-249.