While benefit-sharing has been established as a principle of international law in the areas of biodiversity and plant genetic resources, there is no legally binding framework to regulate benefit-sharing in the context of human genetic resources.  Whether, and with whom, profits generated through intellectual property rights from research using human genetic material should be shared is an on-going debate.  With the recent international trend in the creation of population genetic databases, there has also been increasing public interest in and concern over the commercialisation of these endeavours.  At the same time, the traditional “gift” model, in which research subjects freely donate biological material for purely altruistic reasons, is being challenged, and there is a growing belief that commercial gains from human genetic research ought to be shared with communities that make the research possible in the first place.  In addition, there is emergent social science research which indicates that publics have some expectation of practical reciprocity in the donation context.  In studies that have been done to gauge public attitudes towards population genetic databases, not only is there evidence of mistrust of commercial and business involvement in the enterprise, but also that publics expect some benefit (beyond any potential future health benefits) and control when samples are used for commercial success and profit.

At the interface of law and social science, this research examines how law and legal policy can best respond to concerns emerging from public engagement exercises, with the aim of formulating a socially-informed, yet practical, benefit-sharing model for population genetic research projects. 

Publications

G. Haddow, G. Laurie, S. Cunningham-Burley and K. Hunter, “Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal” (2007) 64 Social Science and Medicine 272-282.

K. Hunter, “DNA as Taxable Property: The Elephant in the Room or a Red Herring?” (2006) 13:3 European Journal of Health Law 263-272.

G. Laurie and K. Hunter, “Benefit-sharing and public trust in genetic research” in G. Árnason, S. Nordal and V. Árnason eds., Blood and Data (Reykjavík: University of Iceland Press, 2004) 323-331.

Presentations

“Tackling community concerns about commercialisation and genetic research”, with Dr. G. Laurie and Dr. S. Cunningham-Burley, at the final PropEur Conference (Birmingham, 21-22 September 2006).
 
“Benefit-sharing: from principle to pragmatism”, at the 16th World Congress on Medical Law (Toulouse, 7-11 August 2006).

“Benefit-sharing and public trust in genetic research”, with Dr. G. Laurie at the ELSAGEN Conference on the Ethical, Legal and Social Aspects of Human Genetic Databases (Reykjavík, 25-28 August 2004).

 “Ownership and commercialisation issues in benefit-sharing arising from population-based research”, at the PropEur Workshop (Cardiff, 8-9 July 2004).