Literature DB >> 23968492

Community engagement with genetics: public perceptions and expectations about genetics research.

Holly Etchegary1, Jane Green2, Patrick Parfrey3, Catherine Street4, Daryl Pullman5.   

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.
DESIGN: 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. DISCUSSION: 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.
© 2013 John Wiley & Sons Ltd.

Entities:  

Keywords:  community consultation; genetics; genomics; public engagement

Mesh:

Year:  2013        PMID: 23968492      PMCID: PMC5060853          DOI: 10.1111/hex.12122

Source DB:  PubMed          Journal:  Health Expect        ISSN: 1369-6513            Impact factor:   3.377


  28 in total

Review 1.  Qualitative research in health care. Analysing qualitative data.

Authors:  C Pope; S Ziebland; N Mays
Journal:  BMJ       Date:  2000-01-08

2.  Structuring public engagement for effective input in policy development on human tissue biobanking.

Authors:  Kieran C O'Doherty; A Hawkins
Journal:  Public Health Genomics       Date:  2010-04-15       Impact factor: 2.000

3.  Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project.

Authors:  Béatrice Godard; Jennifer Marshall; Claude Laberge
Journal:  Community Genet       Date:  2007

4.  The National DNA Database on trial: engaging young people in South Wales with genetics.

Authors:  Claudine Anderson; Rebecca Stackhouse; Anita Shaw; Rachel Iredale
Journal:  Public Underst Sci       Date:  2011-03

5.  Diversity in lay perceptions of the sources of human traits: genes, environments, and personal behaviors.

Authors:  Roxanne L Parrott; Kami J Silk; Celeste Condit
Journal:  Soc Sci Med       Date:  2003-03       Impact factor: 4.634

Review 6.  Genetics and genomics in practice: the continuum from genetic disease to genetic information in health and disease.

Authors:  Muin J Khoury
Journal:  Genet Med       Date:  2003 Jul-Aug       Impact factor: 8.822

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

Authors:  Lidewij Henneman; Danielle R M Timmermans; Gerrit van der Wal
Journal:  Community Genet       Date:  2004

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

Authors:  S Hahn; S Letvak; K Powell; C Christianson; D Wallace; M Speer; P Lietz; S Blanton; J Vance; M Pericak-Vance; V C Henrich
Journal:  Public Health Genomics       Date:  2009-05-13       Impact factor: 2.000

9.  Keeping the GINA in the bottle: assessing the current need for genetic non-discrimination legislation in Canada.

Authors:  Daryl Pullman; Trudo Lemmens
Journal:  Open Med       Date:  2010-04-13

10.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822

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  11 in total

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

Authors:  Laura Forrest; Gillian Mitchell; Letitia Thrupp; Lara Petelin; Kate Richardson; Lyon Mascarenhas; Mary-Anne Young
Journal:  J Community Genet       Date:  2017-08-18

2.  Increasing participation in genomic research and biobanking through community-based capacity building.

Authors:  Elizabeth Gross Cohn; Maryam Husamudeen; Elaine L Larson; Janet K Williams
Journal:  J Genet Couns       Date:  2014-09-18       Impact factor: 2.537

3.  Citizen engagement initiatives in precision health in the European Union member states: a scoping review.

Authors:  Angelo Maria Pezzullo; Michele Sassano; Ilda Hoxhaj; Roberta Pastorino; Stefania Boccia
Journal:  BMJ Open       Date:  2021-07-09       Impact factor: 2.692

4.  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

Review 5.  The Human Genome Project, and recent advances in personalized genomics.

Authors:  Brenda J Wilson; Stuart G Nicholls
Journal:  Risk Manag Healthc Policy       Date:  2015-02-16

6.  'Mr Cummings clearly does not understand the science of genetics and should maybe go back to school on the subject': an exploratory content analysis of the online comments beneath a controversial news story.

Authors:  Madeline Crosswaite; Kathryn Asbury
Journal:  Life Sci Soc Policy       Date:  2016-11-03

7.  Willingness to participate in genome testing: a survey of public attitudes from Qatar.

Authors:  Hanan F Abdul Rahim; Said I Ismail; Amel Hassan; Tasnim Fadl; Salma M Khaled; Bethany Shockley; Catherine Nasrallah; Yara Qutteina; Engi Elmaghraby; Heba Yasin; Dima Darwish; Khalid A Fakhro; Radja Badji; Wadha Al-Muftah; Nahla Afifi; Asmaa Althani
Journal:  J Hum Genet       Date:  2020-07-28       Impact factor: 3.172

8.  Genomics England's implementation of its public engagement strategy: Blurred boundaries between engagement for the United Kingdom's 100,000 Genomes project and the need for public support.

Authors:  Gabrielle Natalie Samuel; Bobbie Farsides
Journal:  Public Underst Sci       Date:  2017-12-14

9.  Citizens' Attitudes, Knowledge, and Educational Needs in the Field of Omics Sciences: A Systematic Literature Review.

Authors:  Giovanna Elisa Calabrò; Michele Sassano; Alessia Tognetto; Stefania Boccia
Journal:  Front Genet       Date:  2020-10-23       Impact factor: 4.599

10.  The mediating effects of public genomic knowledge in precision medicine implementation: A structural equation model approach.

Authors:  John Jules O Mogaka; Moses J Chimbari
Journal:  PLoS One       Date:  2020-10-14       Impact factor: 3.240

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