Inquiry finds brains were removed without consent

The UK government is planning a new human tissue bill for England in response to a report published this week that stated that thousands of brains had been removed during postmortem examinations over the past 30 years without prior family consent and kept for mental health research.

Figure 1.

Many doctors did not realise that they were breaking the law by failing to seek the consent of relatives for the retention of brains for research

GEOFF TOMPKINSON/SPL

The inquiry, led by Her Majesty's Inspector of Anatomy, Dr Jeremy Metters, was prompted by complaints from the family of Cyril Isaacs, whose brain was retained for research after a postmortem examination following his suicide in 1987.

This occurred without the consent of Mr Isaacs or his family. Results of a questionnaire in the Isaacs report showed that more than 21 000 brains collected between 1970 and 1999 were still being held at centres throughout England. The majority of these brains had been retained from coroners' cases in which a postmortem examination was carried out to ascertain the cause of death.

Dr Metters reported: “Most of the brains were initially held for entirely proper diagnostic investigation into the cause of death. A very much smaller number were retained specifically for research or teaching.”

However, he continued: “The feature that unifies both these categories is that very few relatives were aware of the practice and I found no evidence that any were asked for their consent for later research or teaching use. In this way the requirements of the Human Tissue Act [the law that governs the removal and retention of human tissue] were consistently disregarded.”

The act states that the wishes of the deceased and “objections of relatives” should be taken into account when body parts are used for medical research.

In the limited number of consent forms that Dr Metters examined, few specifically mentioned organ retention. “Many doctors did not realise they were breaking the law by failing to seek the consent of relatives,” he reported.

Dr Metters argued that the law should be reviewed to ensure that there is no recurrence of unlawful organ and tissue retention. He considered that there were serious weaknesses in the Human Tissue Act, including no requirement for record keeping and no penalties for people who disregard its provisions.

Responding to the report, Professor Liam Donaldson, the chief medical officer, said: “Seeking patient or family consent for research on organs retained at post mortem is not an optional extra but a legal requirement and an essential feature of good clinical practice. We will be bringing forward a new human tissue bill relating to both adults and children, as soon as parliamentary time allows.”