Advocacy Groups as Research Organizations: Novel Approaches in Research Governance
This chapter presents a case of innovative governance by focusing on genetic advocacy involvement in the management of biomedical research. Patient advocacy activities since the early 1990s have led to the development of novel governance modes and methods, in genetic and genomic research in particular. These are explored here as part of a volume dedicated to the emergence of new models of governance in the life sciences. Examples of how research has been accelerated by advocacy and patient group involvement are discussed to assess the ways in which patient advocacy groups facilitate and contribute to research. Their strategies include collective management of joint resources; promotion and funding of research; claims in controlling research direction and outcomes, contracts and ongoing interaction with researchers, funding institutions and policy-makers. In as much as these groups emerge as stakeholders in re-negotiating research relationships, complex questions arise about their role and overall influence in research. These include concerns about their methodologies and long-term planning, the adequacy of existing mechanisms to incorporate their diverse interests and values, and the role of law in regulating advocacy activities in a responsive, responsible and efficient manner. This chapter examines closely this last aspect of advocacy activities and their regulation.