Doctors 'secretly removed brains for research'

Campaigners yesterday condemned the practice by which the brains of thousands of mentally ill people were used in research after their deaths without their families' consent.

Doctors illegally extracted around 48,000 organs for academic research into mental illness between 1970 and 1999. Half of those brains are still stored in hospitals and universities across the country. The practice was uncovered during a two-year government inquiry, the shocking findings of which will be presented in Parliament tomorrow.

A support group, the National Committee Relating to Organ Retention (Nacor), said the report would "destroy a lot of trust in the medical profession".

Mental health charities said the organs should never have been retained without relatives' permission, but warned against "overreaction". Charities fear there will now be a shortage of brains donated to medical research in the aftermath of the inquiry, led by the Government's Inspector of Anatomy, Jeremy Metters.

His investigation was set up two years ago following a campaign by a Manchester widow, Elain Isaacs. The brain of her husband, Cyril, was removed and given to an academic without her knowledge following his suicide in 1987.

Mrs Isaacs discovered what had happened by chance in 2000, after seeing a letter relating to a separate investigation by the General Medical Council into her husband's GP.

"Unless I'd seen that letter, I would never have known," said Mrs Isaacs. She said that as strict Jews she and her husband would never have agreed to having any part of Mr Isaacs' body removed, as religious customs prohibited it.

Despite an apology from the University of Manchester, Mrs Isaacs continued to campaign for a public inquiry, which was eventually launched by the Secretary of State for Health, Alan Milburn.

Marjorie Wallace, chief executive of the mental health charity SANE, said: "There is a danger that overreaction to this inquiry could mean a step backwards into the dark in our understanding of how to treat mental illness.

"However, because the brain represents the uniqueness of an individual personality, it is even more important that people give informed consent and, in circumstances where that may be difficult to obtain, that the families are involved and the strictest safeguards followed."

Alison Cobb, policy officer for the mental health charity Mind, said: "We would be concerned that the report should bring out the full facts of what happened and give some kind of indication of the extent to which that was or was not common practice."

Government ministers said that, following the inquiry, they planned to amend the law, which currently allows doctors to pass on organs of deceased patients without the explicit consent of relatives.

The report echoes the findings of the 1999 Alder Hey inquiry which reported that staff at the Liverpool hospital had removed the organs of 3,500 children without parents' knowledge. Those families were later awarded a total of £5m in damages.

Nacor said it received 30 calls yesterday from worried members of the public as details of the findings began to emerge. Those anxious calls are likely to multiply with the report's publication tomorrow.

Michaela Willis, Nacor's chairman, whose baby's organs were illegally removed by doctors at the Bristol Royal Infirmary in 1993, said: "I believe the intention of doctors in this and previous cases was not to upset the family, which to me seems like a paternalistic attitude – although they would not have seen it that way.

"Things have changed in the last three years, but this report is likely to destroy a lot of trust in the medical profession."

A Department of Health spokesman was not available for comment.

Nacor has a helpline for families on 01271 377485