Past project: Risks and Benefits
Will examine how patients and their families affected by genetic conditions perceive the balance between the risks and the benefits of new biomedical therapies
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Based on a Citizens' Jury model, the project involved patients and family members in deliberative dialogue on this complex issue.
The Citizens’ Jury involved providing jurors with the knowledge and understanding that they need to undertake an informed critique of existing regulatory and risk analysis systems, enabling them to comment on which aspects of these systems adequately reflect their perspective and which aspects do not. The critique was used to develop a practical framework of recommendations that can be applied to existing systems.
A wider group of patients and families will be engaged in the issue through on-line forums and social networking sites.
The project involved Genetic Alliance UK working in close partnership with Professor Marcus Longley and Amy Simpson, at the Welsh Institute for Health and Social Care at the University of Glamorgan. This project commenced in September 2010 and ran for 18 months. The Jury weekends took place towards the end of 2011.
The project was overseen by a Steering Group made up of experts in the field and patients. The group met for the first time in September 2010, and played a central role in defining in detail the issues to be addressed and in identifying how these issues will be approached.
Funding for the project was provided by six pharmaceutical companies; Novartis, Roche, Shire, AstraZeneca, GlaxoSmithKline and Pfizer. All six donations were made in line with clause 23 (Relationships with Patient Organisations) of the ABPI Code of Practice for the Pharmaceutical Industry 2008. The relationship between the funding bodies and the project will be arm’s length, with funders having no influence on the operation or outcomes of the project.
For further information about the Risks and Benefits project, please contact .