Rare diseases and orphan medicinal products

Crompton, Helen (2002) Rare diseases and orphan medicinal products. UNSPECIFIED. Manchester Metropolitan University. ISSN 1478-8209

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Abstract

This paper surrounds innovation as socially constructed and posits a model for innovation policy based on Mode 2 knowledge production (Gibbons et al 1984), where scientific peer review is replaced by merit review demanded by accountability to a wider social, economic and political sphere. The paper looks at scientific research into rare diseases and the strategies being adopted by biotechnology companies. The paper then introduces the EU Orphan Drug Regulation (2000) and raises concerns about the pharmaceutical industries' use of publicly funded research and patent protection. Other barriers to patients actually receiving new treatments, even if they get as far as production, are raised in the final section.