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.
Avard, Denise; Bucci, Lucie M.; Burgess, Michael M.; Kaye, Jane; Heeney, Catherine; Farmer, Yanick; and Cambon-Thomsen, Anne
"Public Health Genomics (PHG) and Public Participation: Points to Consider,"
Journal of Public Deliberation: Vol. 5
, Article 7.
Available at: https://www.publicdeliberation.net/jpd/vol5/iss1/art7