Public trust, intellectual property and human genetic databanks: the need to take benefit sharing seriously

Abstract

The last decade or so has seen major advances in two key areas of biomedicine: new genetic technologies and stem cell technology. The ongoing success of the research endeavour is predicated on access to essential raw materials: human tissue, human cells and human genetic information. Tissue collections, banked cell lines and databases of genetic information, which are referred to collectively here as human genetic databanks, are vital stores of these research tools. There is a need for human genetic databanks to have adequate and appropriate intellectual property and access policies that provide some certainty in the rights and obligations of all parties involved. It is argued in this paper that one essential requirement for such policies is that they should explicitly make provision for benefit sharing arrangements from two distinct perspectives: general benefit to society at large; and specific benefit to the sources of the original human biological material and/or their social groupings.