Commercial use of tissue samples in the 1958 birth cohort: A study of participants' views (360G-Wellcome-097093_Z_11_Z)

To characterise the views of a sample of participants in the 1958 Birth Cohort on possible commercial uses of donated blood samples and to consider the legitimacy and legality of allowing such use within the terms of the original consent. More specifically, the aims of study are: To explore participants' understandings of the statements in the 1958 birth cohort information sheets to the effect that 'samples will be used for non-commercial research purposes only' and that use will be for 'future medical studies'. To identify whether participants' views are likely to vary depending on the type of commercial use proposed or the type of organisation seeking access to the resource;Explore participants' views on the value of creating a Participants' Panel to provide a forum for consulting participants on ethical,legal and scientific issues in the future To explore participants' understandings of the statements in the 1958 birth cohort consent documentation to the effect that information and samples will be used solely 'for use in future medical research studies of the causes, diagnosis, treatment or outcome of disease'. Identify a range of other commercial use clauses or principles seen as "protective" or "restrictive" or "useful compromises" by cohort owners, RECs, and industry, and explore participants? views of these To consider whether commercial access might be tolerated and lawfully granted under the existing consent and/or whether a reconsent procedure would be required for commercial use. Consult with a small number of key stakeholders, including Research Ethics Committees, the UKBB Ethics and Governance Council, and a small number of commercial firms to identify any further challenges or questions in relation to possible commercial use of tissue.