Benefit Sharing in Smaller Markets: The Case of Newfoundland and Labrador

• Published in: Public Health Genomics
• Main Authors: Pullman, Daryl, Latus, Andrew
• Format: Article in Journal/Newspaper
• Language: English
• Published: S. Karger AG 2003
• Subjects: Newfoundland; Iceland
• Online Access: http://dx.doi.org/10.1159/000078166; https://www.karger.com/Article/Pdf/78166

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.