Additional file 1: of Clinical exome sequencing in France and Quebec: what are the challenges? What does the future hold?

Details on data collection and analysis methodology. (DOCX 30 kb

Preferences for consent models, data sharing, allocation of profits and ownership of samples and data.

<p>Respondents selected from among the listed options their preferred type of consent (A), scope of data sharing (B), use of any profits from the research (C), control over samples and data (D). All graphics display the percentages of participants opting for provided multiple choices. In order to reflect the fact that some participants used the “other” box to select more than one of the listed options, those answers were reassigned to the categories in question, resulting in percentages summing to over 100% in (C) and (D).</p

Top 10 Themes in Risks Respondents Identified with a Confidentiality Breach.

<p>Top 10 Themes in Risks Respondents Identified with a Confidentiality Breach.</p

Data and Sample Sharing Model Preferences versus Demographic Characteristics of Survey Respondents.

<p>^†Data are: mean±SD (range)</p><p>*The assumptions for the Chi Square test used were not satisfied [<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0129893#pone.0129893.ref032" target="_blank">32</a>, <a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0129893#pone.0129893.ref033" target="_blank">33</a>].</p><p>Data and Sample Sharing Model Preferences versus Demographic Characteristics of Survey Respondents.</p

Demographics of Survey Respondents.

<p>“West” includes the provinces of British Columbia, Alberta, Saskatchewan, and Manitoba. “East” is defined as Quebec, New Brunswick, Nova Scotia, Prince Edwards Island, and Newfoundland and Labrador. Respondents that selected that they had attended “some high school”, “graduated from high school”, had attended some or graduated from “college / CEGEP / trade school” were classified under “Did not attend university”. Those that self-identified as having attended “some university” or holding a “university undergraduate degree, such as a Master’s or PhD” or a “university graduate degree, such as a Master’s or PhD” were classified as “attended university”.</p><p>Demographics of Survey Respondents.</p

Top 10 Themes in Respondents’ Desired Information about Biobank Projects.

<p>Top 10 Themes in Respondents’ Desired Information about Biobank Projects.</p

Pearson Chi-Square of Demographic Variable Pairs.

<p>Pearson Chi-Square of Demographic Variable Pairs.</p

Statistics on DACO applications for controlled access to ICGC data (current as of June 15, 2012).

<p>Statistics on DACO applications for controlled access to ICGC data (current as of June 15, 2012).</p

ICGC-DACO tiered access process and storage of controlled ICGC data.

<p>The Ontario Institute for Cancer Research (OICR) in Toronto is the host of the ICGC Data Coordination Center (DCC). All ICGC controlled access data is hosted at DCC with the exception of the raw sequence reads (BAM files), which are currently hosted at the European Bioinformatics Institute's (EBI) European Genome-phenome Archive (EGA). Access to these files is coordinated with DCC once DACO approval is granted.</p