Benefit sharing in smaller markets: the case of Newfoundland and Labrador

Community Genetics
Daryl Pullman, Andrew Latus

Abstract

This case report describes recent efforts in the Canadian province of Newfoundland and Labrador to establish an appropriate benefit-sharing model for human genetic research conducted there. The relatively homogeneous population of this island province has proven to be attractive to the drug development industry. However, unlike large-scale national projects that include broad benefit-sharing arrangements from the outset such as those proposed for places like Iceland and Estonia, there are no plans in Newfoundland and Labrador to establish a large gene bank. Hence a benefit-sharing protocol that will assess individual genetic studies on a case by case basis has been proposed. The province is moving toward legislation to establish a Provincial Health Research Ethics Board (PHREB) that will ensure that all human health research conducted in the province receives local ethics review. The proposed benefit-sharing protocol calls for the establishment of a Standing Committee on Human Genetic Research (SCHGR) that will operate in concert with the PHREB and will ensure that research sponsors enter into appropriate benefit-sharing arrangements with the province.

Citations

Sep 15, 2009·Genome Medicine·Naomi HawkinsCatherine Heeney
Aug 24, 2007·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·David E Winickoff

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