The idea of benefit-sharing in research which requires the use of human genetic material has been much discussed in recent years.  Roughly, the idea is that those who seek to profit financially from such research should somehow share those benefits with the individuals who make their research possible in the first place (i.e., research subjects) or perhaps with humanity more broadly.  This idea has been widely, although not universally, endorsed.  See, for instance, statements by the Human Genome Organization (2000) and the WHO Human Genetics Programme (2002).  Exactly how policies on benefit-sharing should be implemented and the form that benefits should take (e.g., a share of future royalties, contributions to local research facilities) is controversial.  

While there has been considerable discussion of the idea of benefit-sharing, it has been somewhat one-sided since, to date, it has focused primarily on the interests of research subjects and their communities.  The interests of the research sponsors have been largely ignored.  It is, however, important to focus on their interests for two reasons.  First, because their interests, like any others, deserve a fair hearing.  Second, because if policies on benefit-sharing are implemented in a manner that potential sponsors of human genetic research see as unreasonable, the policies are likely to be counter-productive.  They may make the area in which the policy operates unattractive as a place to do research. 

Our project seeks to investigate the views of those engaged in commercial human genetic research toward the idea of benefit-sharing in general and, in particular, to a proposal for dealing with benefit-sharing in Newfoundland and Labrador that was recently advanced by the co-P.I.’s of this project (Pullman & Latus, 2002, 2003).  The project has two phases.  During the first phase, we will survey Canadian biotech and pharmaceutical companies involved in human genetic research to determine their awareness of and current approaches to benefit-sharing.  The survey will also aim to identify respondents’ concerns about benefit-sharing.  In the second phase, we will carry out more in-depth interviews with representatives of industry.  The result of the project should be a much clearer understanding of the views of sponsors of genetic research toward benefit-sharing.

Human Genome Organization.  Statement on Benefit Sharing, 2000. 

Pullman, D. & A. Latus.  “DNA Databases:  A Benefit-Sharing Model.” L’Observatoire de la Genetique.  Number 6, September, 2002.  Also available in French.

Pullman, D. & A. Latus.  Policy Implications of Commercially Sponsored Human Genetic Research in Newfoundland and Labrador.  A report for the Newfoundland and Labrador Department of Health and Community Services, 2003. 

WHO Human Genetics Programme. “Collaboration in Medical Genetics:  Report of a WHO Meeting.” Toronto, Canada, April, 2002.