Brain donation for research: consent and re-consent post Alder Hey

Recent scandals relating to the unconsented retention and use of human organs in the UK have led to widespread changes to governance and ethical frameworks for research throughout England and Wales. Ethics committees now ask for proof of specific consent where general medical research consent was once sufficient. In order to meet these new requirements ongoing medical research studies have had to replace existing consent forms with more detailed ones that must be signed anew by prospective donors. In this paper we discuss how one such study has tackled this process of re-consent.

The MRC Cognitive Function and Ageing Study has recently been asked to consider renewal of consent on all individuals with existing signed intentions to donate brain tissue. We approached 218 of our respondents successfully for more detailed consent.

All agreed to genetic research and only a very small proportion did not want samples used by commercial companies or collaborators abroad. Our interviewers reported that respondents were perplexed by the need to give consent again with more detailed forms, as they considered they had already received sufficient information and had given implicit consent for all the detailed uses of their tissues and their original signing of a broad consent.

Such re-consenting has considerable implications for study infrastructure and costs of research. It did not alter the outcome and it seems unlikely that the public, or our respondents, would see regular updating of consent to constitute an efficient use of public research funds.