Fair Shares and Sharing Fairly: A survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking

 Joly, Y., Dalpé, G., So, D., Birko, S., “Fair Shares and Sharing Fairly: A survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking” 10:7 (2015) PLOS ONE e)129893. doi:10.1371/journal.pone.0129893 1-20.

Biobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants’ information is managed and shared. Three previous studies of the Canadian public’s opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public.

This content has been updated on January, 8 2016 at 15 h 45 min.