Ethics and Management

All six centres and the Coordinating Centre operate within the legal requirements laid down by the Human Tissue Authority (Human Tissue Act 2004), governing collection, storage, sample distribution for research and disposal of post mortem tissue.

All potential donor recruitment and clinic assessments are undertaken in compliance with the Mental Capacity Act (2005) and other good practice guidelines.

Each Brain Bank and the Coordinating Centre is governed by a management committee of expert doctors and scientists (in neuropathology, neuroscience and neuropsychiatry), independent experts and lay members. The tissue and data access committees look at each application to ensure tissue and data is used wisely, responsibly and efficiently.

Ethical approval

The overall project and its management committees have been approved by the National Research Ethics Service. Each Brain Bank is also approved by the National Research Ethics Service. Each Brain Bank and BDR Coordinating Centre submit annual reports to the National Research Ethics Service.

Each donation of data and tissue is used towards a number of approved projects. The identity of the donor is never revealed to the researcher, and the donor’s identity will never be revealed in any publication. Database security is the highest available.

Staff

All our research field team are dedicated professionals who undergo regular refresher training in clinical practice.

Voluntary participation

Participation in Brains for Dementia Research is entirely voluntary, and potential donors can withdraw at any time without giving a reason. Potential donors taking part with the agreement of a consultee can likewise be withdrawn.

After death of the potential donor their nominated representative or next of kin can subsequently withdraw the potential donor on the donor’s behalf, at any time, either before or after donation has taken place, should they wish to do so. It is therefore important that key family members are fully aware of the donors wishes.

We are very conscious that dementia is an upsetting and traumatic condition for both people affected and their carers. We are mindful of the fact that brain donation takes place at a highly difficult time for family members.