Research ethicist says Canada should take lead in ensuring scientific benefits for all

Canada has the opportunity to take a leading position in reactivating a largely neglected clause of the 1948 Universal Declaration of Human Rights (UDHR) enshrining the right of all people to share in scientific advancement and its benefits, says one of Canada's preeminent research ethicists. The clause — 27 (1) — states that "Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits".

Dr Bartha Knoppers, director of McGill Univ's Centre of Genomics and Policy and Canada Research Chair in law and medicine, says Canadians should explore how they can activate the right of science and the right to recognition of science production by promoting responsible data sharing. .

Speaking at the annual public meeting of the Canada Foundation for Innovation, Knoppers says the UDHR clause was included in the 1966 International Covenant on Economic, Social and Cultural Rights. which states that all citizens have the right to benefit from scientific progress.

"It's now an actionable item with international legal force … It's a totally different way of thinking about science," says Knoppers.

One potential solution is a cloud commons with major funding agencies putting their data in the cloud. Canada invested $7.3 million in a Cancer Genome Collaboratory in 2014 and Knoppers said the challenge is to determine how to activate the this and other cloud commons so that they serve all people. One potential avenue is the Global Alliance for Genomics and Health (GA4GH), a volunteer coalition which Knoppers co-chairs that acts as a convening space to try to harmonize approaches to ethics and regulation.

With 375 organizations from 36 countries, Knoppers says GA4GH has the potential to address both citizen benefits of science as well as intellectual property protection.

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