Tissue Samples as ‘Gifts’ for Research: A Qualitative Study of Families and Professionals

Abstract

Current policy in many countries, including the UK, is that tissue samples used for medical research should be treated as ‘gifts’ from patients. This approach is increasingly criticised. Among the solutions proposed is introducing an individual property rights regime for tissue donors. We report a qualitative study of the views of 79 family members of children with cancer and 54 health professionals in the area of paediatric oncology. We argue that systems of governance and regulation need to respect the values of donors. A charitable trust model might be more consistent with the values of solidarity and reciprocity expressed by the study participants than an individual property rights approach.