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Donations of brains are probed in Maine

Special prosecutor talking to families

A Maine special prosecutor is interviewing the families of about 100 people who died suspicious or unexpected deaths to determine whether their brains were improperly removed from their bodies for research.

The brains were shipped from the Maine medical examiner's office to a Maryland institute for research, and a state employee collected fees of $1,000 to $2,000 for each one.

Some families are saying they never consented to the organ donations, setting off state and federal investigations. The shipments to the Bethesda-based Stanley Medical Research Institute have been halted.

"It wasn't an organ donation; it was an organ taking," said lawyer Alison Wholey Mynick. She said her firm plans a lawsuit on behalf of a client who refused a request to donate the brain of a middle-aged spouse but later learned from investigators that the organ had been seized anyway.

The probe has ignited concern about tissue donation for research, a field that specialists say is poorly regulated and vulnerable to exploitation. Grieving relatives, contacted by phone in the hours or days after a death, typically have no record of what they agreed to donate, critics say.

The organs are coveted by researchers, who sometimes make arrangements with states to seek access to cadavers.

From 1999 through spring 2003, the Maine medical examiner's office allowed Stanley Medical Research Institute to collect brains from cadavers, with permission from families. The institute supports research on schizophrenia and manic depression and provides brains to researchers worldwide.

Matthew Cyr -- the state's funeral inspector, who had a contract answering after-hours calls for the medical examiner's office -- earned $1,000 a month for supplying brains to Stanley, plus $1,000 for each normal brain and $2,000 for every brain of a deceased person diagnosed as schizophrenic or manic depressive.

After receiving complaints from families, Attorney General Steven Rowe and US Attorney Paula Silsby announced an investigation in November, said Chuck Dow, director of communications and legislative affairs.

Recently, Rowe appointed Assistant US Attorney Rick Murphy to serve as special prosecutor and take over the state probe, since Rowe's office oversees that of the medical examiner. "I want to avoid even the appearance of a conflict of interest with respect to the investigation and subsequent decision-making regarding this matter," Rowe said in a statement.

The probe followed a lawsuit by a Gorham, Maine, couple who said their son's brain was taken without their permission. A settlement was reached through a mediator, but the couple's lawyer, John Campbell, declined to disclose the terms yesterday.

When A.J. Gagnon died of an accidental drug overdose at age 28 in April 2003, his mother, Lorraine Gagnon, agreed to let a small piece of his brain tissue be used for research, Campbell said. She said she soon received a letter from Stanley thanking her for her son's contribution to research on schizophrenia.

Lorraine Gagnon contacted the Stanley institute and realized they had taken his entire brain. Campbell said they also took tissue from Gagnon's liver, spleen, and pituitary gland, none of which she had agreed to, Campbell said.

Byrne J. Decker, a lawyer with the Portland law firm representing Stanley Research, declined comment on behalf of the institute, because of the ongoing investigations.

Stanley stopped collecting brains from the Maine medical examiner's office in May 2003. The medical examiner's office is in the process of changing its procedures on organ and tissue donations.

Cyr, a police officer in the town of Bucksport is no longer working for the medical examiner. Neither he nor his lawyer could be reached last night.

Maine, like many states, allows organs to be harvested from cadavers, provided that a family member gives consent over the phone if the call is recorded or if there is a witness listening on the line. Campbell argues that the system could be vastly improved if written consent is required, which would not only protect relatives against unscrupulous organ harvesters, but it could also protect research organizations against claims by grieving relatives that they did not understand the agreement.

But Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said that, unlike organ donations for living recipients, donations from cadavers are only loosely regulated. "The only thing that stands between this sample and the grave is someone wanting to study it," said Caplan, author of "The Ethics Of Organ Transplants."

The Massachusetts Office of the Chief Medical Examiner last year ended its involvement in organ or tissue donation, after the state Ethics Commission found a conflict of interest, said Katie Ford, spokeswoman for the Executive Office of Public Safety, which oversees the office.

The commission pointed to the office's reliance on employees of two private organ banks to prepare official case reports on suspicious deaths rather than hiring office staff. It said the organ bank employees had an interest in quickly releasing bodies for organ and tissue donation, while the medical examiner's duty is to painstakingly investigate and determine the cause of death.

Stephanie Ebbert can be reached at ebbert@globe.com. 

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