Open science precision medicine in Canada: Points to consider

Abstract

Open science can significantly influence the development and translational process of precision medicine in Canada. Precision medicine presents a unique opportunity to improve disease prevention and healthcare, as well as to reduce health-related expenditures. However, the development of precision medicine also brings about economic challenges, such as costly development, high failure rates, and reduced market size in comparison with the traditional blockbuster drug development model. Open science, characterized by principles of open data sharing, fast dissemination of knowledge, cumulative research, and cooperation, presents a unique opportunity to address these economic challenges while also promoting the public good. The Centre of Genomics and Policy at McGill University organized a stakeholders’ workshop in Montreal in March 2018. The workshop entitled “Could Open be the Yellow Brick Road to Precision Medicine?” provided a forum for stakeholders to share experiences and identify common objectives, challenges, and needs to be addressed to promote open science initiatives in precision medicine. The rich presentations and exchanges that took place during the meeting resulted in this consensus paper containing key considerations for open science precision medicine in Canada. Stakeholders would benefit from addressing these considerations as to promote a more coherent and dynamic open science ecosystem for precision medicine.

Open Data in the Era of the GDPR: Lessons from the Human Cell Atlas

“…The term, however, can encompass several meanings (3), and the concept is implemented in a number of different ways (open source licensing, open data access, open innovation, etc.) (23).…”

The Human Genome Organisation (HUGO) and a vision for Ecogenomics: the Ecological Genome Project

“…In these respects, there will also be regional and international cultural, historical, social, and structural obstacles and dynamics to navigate. The Ecological Genome Project blueprint, discussed below, will require norms for access and use of biobanks and data, descriptions of qualified researchers (i.e., with a much wider scope of interest, there will be unconventional access requests, as well as the dangers of open access to pathogenic sequences) [ 29 ], and principles that promote diverse interests in clinical and veterinary medicine, as well as conservation and ecology. We envisage modified training in collecting and using the specimens and interpreting environmental-genomic exposure histories.…”