Public Health Genomics (PHG) and Public Participation

Points to Consider

Dados Bibliográficos

ID21255552
AutoresDenise Avard (Université de Montréal), Lucie M Bucci (0000-0003-2713-0975, Université de Montréal), Martha Burge (0000-0002-9443-0671, University of British Columbia), Michael M Burgess (University of British Columbia), Jonathan Kaye (0000-0002-7311-4725, University of Oxford), Jane Kaye (The Ethox Centre, University of Oxford), Catherine Heeney (0000-0002-0725-974X, University of Oxford), Yanick Farmer (0000-0003-0623-1179, Université de Montréal), Anne Cambon-Thomsen (National Centre for Scientific Research), Anne Cambon‐thomsen (0000-0001-8793-3644, Inserm)
Ano2009
Volume5
Fascículo1
Data de publicação2009-05-15
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoJournal of Deliberative Democracy (JOURNAL)
Identificadores do periódicoISSN: 2634-0488 • E-ISSN: 2634-0488
EditoraUniversity of Westminster Press (PUBLISHER • GB)
DOI10.16997/jdd.78
OpenAlexW2176686526
IdiomaEN
Citações recebidas5
Referências citadas12

Large-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation to address the many social, legal and ethical complexities raised by the introduction of biobanks for public health research. However many researchers and decision makers struggle with how to promote public participation. This paper presents six issues that public participation must address. These issues are then applied to three large scale genetic biobank projects: CARTaGENE, Generation Scotland, and the United Kingdom Biobank. Finally, the efforts of these biobanks will be compared to the British Columbia Biobank deliberation project, which implemented a deliberative public participation experiment on biobanking

Biobank · Bioinformatics · Biology · Deliberation · Environmental health · Geography · Political science · Population · Public engagement · Public health · Public participation · Public relations · Biomedical Ethics and Regulation · Ethics in Clinical Research · Law · Medicine · Mental Health and Patient Involvement · Nursing