http://www.biomedcentral.com/news/20030516/07

Researchers fear shortage of brain tissue

Concerns as inquiry confirms brains removed during postmortems were kept without family consent

By Susan Mayor
 

English scientists using human brain tissue in their research are concerned that the public response to a recent inquiry showing that brains were retained from postmortem without proper consent may reduce the numbers of brains donated for research.

David Dexter, scientific director of the UK Parkinson's Disease Society Brain Tissue Centre said, "There is no doubt that this is bad news for tissue banks, even though we use correct informed consent procedures. People will inevitably get a negative view about the use of brains for research from this inquiry."

The Isaacs Report, which summarizes the results of the inquiry and was released this week, revealed that more than 21,000 brains collected between 1970 and 1999 were still being held at centers throughout England. The majority of these brains had been retained from coroners' cases in which a postmortem was carried out to ascertain the cause of death. Most of the brains were initially held for diagnostic investigation into the cause of death, although a small number were retained specifically for research or teaching.

But Her Majesty's Inspector of Anatomy, Jeremy Metters, who led the inquiry, warned, "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 Metters examined, few specifically mentioned organ retention. He recommended the law should be reviewed to ensure there was 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 disregarded its provisions.

The act should be changed or replaced, he suggested, so that the retention of organs and tissues from postmortems without legally defined and valid consent would be an offense. There should be appropriate penalties for unauthorized retention, and the term "lack of objection" in the act should be replaced by "with consent of." The government has agreed to revise the law on this issue.

Marjorie Wallace, chief executive of the mental health charity SANE, warned of the potential impact on research into neurological and psychiatric conditions, "The public outcry that has surrounded this inquiry, and that followed the previous Alder Hey Inquiry [in which tissues from children were retained] has led to a slowing down, and almost halting, of research using brain tissue from people with schizophrenia and depression." She added, "People working in neuropathology research are increasingly working in an atmosphere of fear and confusion, and many are leaving the field."

Researchers consider it essential that efforts are made to ensure human brain tissue continues to be available. Nadeem Khan, coordinator of the MRC London Brain Bank at the Institute of Psychiatry, King's College London, said, "A lot of research needs human brains. For example, biochemical studies require brain tissue to isolate proteins and neurotransmitters that may be implicated in degenerative disorders. Human tissue is required for proteomic work and for studies unraveling the links between genes and disease mechanisms." He added that control brains—from people who die without diseases affecting the brain—continue to be necessary for comparative studies.

The investment in research using human brains is considerable. "Research worth about £50 million currently relies on tissue from our brain bank," reported Khan. "Brain banks represent a very important national research resource."

Education about use of organs for research and better donor systems are needed to ensure that people continue to donate brains for research, Dexter suggested. "It is important to explain to patients and their families what donated tissue will be used for and feed any results back to families."

In his center, as in other brain banks, brains are only taken from patients who have given their fully informed consent, in addition to their family consenting. Patients who want to donate their brain to the bank complete a consent form and then carry a donor card with a contact telephone number. Once a brain has been obtained, a full neuropathologic diagnosis is sent to the patient's general practitioner and family. Families are also kept informed by regular newsletters about the research findings coming out of the brain bank. The MRC London Brain Bank operates a similar newsletter system for feeding research outcomes back to families.

The government is in the process of reviewing organ donation procedures. But Dexter warned that a draft donor consent form currently being developed is much too long, at 14 pages, for many people to complete. "We need to make it as simple as possible—while maintaining fully informed consent—for people to donate organs for research," he concluded.