Group rights in biolaw: a model approach

Abstract

This thesis investigates legal, ethical and social aspects of group participation in genomic research. Groups in research are diverse. They can be families, patient groups, native tribes, local communities, ethnic collectives or entire national populations united by disease heredity, common cultural or personal ties. Despite rapidly rising scientific and policy interest in research with groups, legal protections for group rights and responsibilities are scarce. This work discusses current problems in defining what constitutes groups, together with dominant normative assumptions and ambiguities in existing research protections. It focuses on key issues of representation, accountability, resourcesharing and control in the management of scientific and commercial uses of group research. It highlights the increasing value of groups as research partners and examines emerging cooperative models, in the quest for appropriate legal frameworks for group protections. The thesis recommends a new concept of group empowerment and considers legal models for the implementation of the empowerment principle in modern research ethics. It proposes a way forward for law to focus on the collaborative aspects of group-researcher relationships, and to identify group research gifts as conditional, reciprocal returns of favours. Under the principle of group empowerment, reciprocity and cooperation are central in the development of adequate mechanisms for group protections. This new approach contributes to current thinking about ways to redress inequities in the balance of power between groups and researchers, build viable mechanisms for shared governance, and facilitate group involvement in genomic endeavours.