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Patients, Profits and Values: Genzyme and the Creation of Informed Consumers of Potential Innovations

May 8 2006

Venue: Seminar Rm, 1.06, Old Surgeons' Hall, High School Yards

Organised by: Innogen

The hope for innovations that will treat or cure has led many biotechnology firms and patients' organisations to invest in and conduct genetic research. Drawing upon a case study of the biotechnology firm Genzyme, this paper explores the biomedical futures and markets it is creating in the field of ultra-orphan diseases through the development of enzyme replacement therapies for illnesses such as Pompe disease. One feature that will be drawn out of this case study is how Genzyme is involved in the creation of informed consumers of potential innovations. It will be argued that central to the development of markets for rare diseases is the creation of "informed consumers" prior to the marketing of a treatment. These consumers are encouraged to become knowledgeable about their condition, understand the long research and development process, and comprehend the regulatory procedures required for the approval of new therapies. Furthermore, they need to be provided with a range of services to help them understand and cope with their condition whilst the therapy is being developed. By focussing attention on Genzyme's "branding" practices prior to the licensing of a treatment by regulatory authorities, I wish to draw attention to the multiple ways in which economic value is generated by biotechnology firms that does not solely rely on the manipulation of life itself.,1355,en.t4.html