ArticleEuropean journal of human genetics : EJHG2013
Consulting the community: public expectations and attitudes about genetics research.
Article in European journal of human genetics : EJHG, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
16 citing papers in PubMed.
- Online discussion effects on intention to participate in genetic research: A longitudinal experimental study.Psychology & health · 2016Trial
- "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 · 2024Article
- Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study.Journal of community genetics · 2022Article
- Pursuing Public Health Benefit Within National Genomic Initiatives: Learning From Different Policies.Frontiers in genetics · 2022Article
- Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.Methods in molecular biology (Clifton, N.J.) · 2021Article
- Public Attitudes Toward Precision Medicine: A Nationwide Survey on Developing a National Cohort Program for Citizen Participation in the Republic of Korea.Frontiers in genetics · 2020Article
- Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community.Journal of community genetics · 2019Article
- Family Matters: The Nurse's Role in Assessing Family Health History in Ocular Disease.Insight (American Society of Ophthalmic Registered Nurses) · 2018Article
- Consumer attitudes towards the establishment of a national Australian familial cancer research database by the Inherited Cancer Connect (ICCon) Partnership.Journal of community genetics · 2018Article
- Focusing attention on ancestral diversity within genomics research: a potential means for promoting equity in the provision of genomics based healthcare services in developing countries.Journal of community genetics · 2017Article
- Engaging a state: Facebook comments on a large population biobank.Journal of community genetics · 2017Article
- The ECOUTER methodology for stakeholder engagement in translational research.BMC medical ethics · 2017Article
- Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium.Genetic testing and molecular biomarkers · 2017Article
- Patient and citizen participation in health: the need for improved ethical support.The American journal of bioethics : AJOB · 2014Article
- Let's talk about genes, and I dont mean trousers: encouraging cancer genetics literacy amongst children.Ecancermedicalscience · 2014Article
- Exploring parents' attitudes towards a multicentre cohort study of children with burns injuries: A qualitative interview study.Scars, burns & healingArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.