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Nadja Kanellopoulou (2009)

Advocacy Groups as Research Organisations: Novel Approaches in Research Governance

In: The Limits to Governance: The Challenge of Policy-making for the Life Sciences, ed. by Cathie Lyall, James Smith and Theo Papaioannou. Ashgate, chap. 9, pp. 193-216. (ISBN: 978-0-7546-7508-2).

Advocacy organisations for genetic diseases become increasingly involved in the management of biomedical research. This chapter examines current models of advocacy and patient engagement in the governance of genomic research. It provides examples of how research can be accelerated by these groups, as these groups create innovative modes of research governance with collective management of joint resources and control of research direction and funding. Questions arise about their methodology, strategy and long-term planning, and the role of law in regulating their influence in biomedical research and health care policy.
non-governmental actors, intellectual property, commercialisation, control of biomedical research, public attitudes, genomics governance, contract, research funding, advocacy, public policy, patient engagement

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