Human Genetic Material Benefit Sharing

Pharmaceutical firms get financial benefit from the use of human genetic material while disease and founder populations who provide the genetic materials do not. A government researcher wanted to know if a benefit sharing agreement was possible. The design and facilitation of this intervention needed to be approved by a Health Canada ethics committee because the topic was human genetic material. At first: Pharmaceutical firms doing genetic research reach out to people who have the necessary genetic material and sensitively discuss the aims of the research but do not necessarily discuss benefits. Our approach: Involve disease groups and genetic material founder populations on the meaning of “benefits” and have similar conversations with pharmaceutical firms to see if there is common ground. A conference was held with scientist, researchers and pharmaceutical firms to determine their perspective on benefit sharing. A second conference was held founder populations and disease groups to find out why they give genetic materials and what they might consider benefits. A third conference was held with both groups together to see if a consensus could be reached on a benefit sharing agreement that could be used for genetic research in the future. The result:  The participants co-created a document that should be given to all participants of genetic research, outlining the possibilities of benefit sharing agreements.