Title: | Developing a tiered consent process for individuals recruited to longitudinal biobank research using a case study of NHS blood donors |
Project Description: | Consent to longitudinal biobank research poses a number of challenges for traditional informed consent models, which tend to assume that participants are consenting to specific, well-bounded studies with readily identifiable risks. Biobanks are better understood as a form of infrastructure or research resource. This study aims to develop the content for a tiered consent process which can be used in NHS Blood and Transplant (NHSBT) routine blood donation sessions to recruit healthy blood donors to the NIHR Blood and Transplant Research Unit (BTRU) in Donor Health in Cambridge and the national NIHR BioResource for Translational Research. The study will involve engagement and partnership with key stakeholders, including researchers, healthy volunteers, patients, operational staff, clinical care teams and the public. By developing and evaluating a participatory methodology for the creation of content for tiered consent processes, this study will also allow others to draw upon our experience to develop similarly tailored and context-specific tiered consent processes in relevant fields. |
Project organisation | |
Start date: | 1st December 2017 |
End date: | 28th February 2019 |
Contact person: | Dr Natasha Kriznik |
Contact Details: | Primary Care Unit Institute of Public Health University Forvie Site, Robinson Way Cambridge Cambs CB2 0SR UK Telephone: tba Fax: 01223 762515 E-mail: nmk33@medschl.cam.ac.uk |
Collaborative: | Professor Mary Dixon-Woods (CCHSR); Dr Natasha Kriznik (CCHSR); Professor John Danesh (Cambridge Biomedical Research Centre and University of Cambridge); Dr Emanuele Di Angelantonio (NIHR Blood and Transplant Research Unit in Donor Health and Genomics and University of Cambridge); Dr Rebecca Simmons (CCHSR); Dr Gavin Cho (NHS Blood and Transplant); Professor David J Roberts (NHS Blood and Transplant and University of Oxford); Dr Robbie Duschinsky (Applied Social Science Group); Felix Gille (CCHSR); Professor Graeme Laurie (University of Edinburgh); Professor Willem Ouwehand (NHS Blood and Transplant and University of Cambridge). |
Funding information | |
Funding Organisation: | Biomedical Research Centre |
Funding Reference: | |
Funding Amount: | £30,377 |
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Further Information, References and Publications | |