Do the current ethical and legal policies applicable to research with genomic databases sufficiently account for the new reality of open biotechnology? How could the current policy framework be improved to facilitate the transition to a more transparent, collaborative research context? Our research will investigate the impact of open biotechnology on research ethics and legal policies with a particular focus placed on informed consent (scope of consent, privacy, data ownership) to large open database projects. We will use a combination of quantitative and qualitative research strategies that will offer complementary applied legal and ethical data on the impact of open biotechnology on the governance of genomic research. The use of a common research methodology in all streams of the project will facilitate comparisons and integration of our results. Our methods will include comparative legal and ethical research (policy review, legal research), questionnaire analysis and focus group interviews. To validate our findings, we will engage stakeholders at the annual meetings of two major organizations involved in research with open databases: The Public Population Project in Genomics (P3G) and the International Cancer Genome Consortium (ICGC).
Via Florence Piron