WP2 - Population
Workpackage Leader: Darren Shickle (University of Leeds)
This workpackage wants o describe the practical, legal and ethical issues faced by biobanks and how these have been addressed, to inform scientists and policy makers when making decisions as to whether to develop future retrospective versus prospective biobanks and to improve governance arrangements by better understanding the problems faced by existing biobanks.
Interviews will be conducted with the scientists responsible for various disease specific and population biobanks. For example, in the United Kingdom interviews will be conducted with scientists responsible for UK Biobank and the Airwave Health Monitoring Research Programme.
It is proposed to conduct interviews in relation to: four large prospective population biobanks, six smaller prospective cohort studies, and twenty small disease specific case control registers.
The interviews will examine practical, legal and ethical considerations in establishing and maintaining the biobank/register. Following questions will be addressed: What ethical scrutiny has been given to the biobank when it was established? What governance arrangements are in place monitoring the Biobank? How were the public/patients consulted before establishing the biobanks? Are they involved in the on-going governance arrangements? How are subjects being recruited? What has the response rate been? How is informed consent being sought? How have the future uses of the biobank been defined? How is confidentiality being maintained? What measures are in place for data protection? Who has access to the database? How have intellectual property rights been addressed?
