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.

Commissions, comités, conseils, les instances spécialisées dans les questions d’éthique des sciences de la vie prennent de nombreuses dénominations et forment une nébuleuse extrêmement diverse. Riche est la littérature qui s’est donné pour objectif de différencier ces organes. Les diverses tentatives de typologie semblent s’accorder sur l’existence de deux comités d’éthique-types : les comités d’éthique clinique ou hospitaliers et les comités d’éthique de la recherche biomédicale. C’est à partir de ces catégories que seront créés de nombreux comités exerçant des compétences variées et agissant au niveau local, national, régional et international. S’agissant de leurs caractères principaux, la doctrine dégage trois éléments fondamentaux : l’indépendance, la pluridisciplinarité et le pluralisme. En dépit d’une évolution plus tardive dans le domaine des technologies, du progrès médical et plus généralement des sciences de la vie, l’Amérique Latine a pleinement pris part au phénomène dit d’institutionnalisation de la bioéthique ; non sans quelques spécificités. L’établissement des instances d’éthique dans cette région est caractérisé par la priorité accordée aux principes de justice et d’accès aux services de santé en raison de la prééminence des problèmes socio-économiques. / The organizations and authoritative entities specialized in evaluating the ethical issues raised by recent developments in the life sciences take on extremely diverse denominations and forms such as commissions, committees, and boards that all form acomplex nebulous. Research focusing on differentiating these bodies is very rich. Various attempts at categorizing these organizations agree on the existence of two main types ofethics committees, hospital ethics committees, and biomedical research ethics committees. On the basis of these categories numerous sub-committees are then created and exercise a variety of skills at the local, national, regional and international levels. As for their main characteristics, consensual research identifies three basic elements: independence,interdisciplinarity and pluralism. Despite a relatively late development in the general field of the life sciences and more particularly in the realm of technology and medical progress, Latin America has fully participated in the phenomenon now known as the institutionalization of bioethics, and has done so with specific characteristics to its region. Indeed, the establishment of ethical review boards in this region is above all preoccupied by the priority given to the principles of justice and access to health services due to the predominance of socio-economic issues.