- The Washington Times - Friday, January 7, 2005

A Bethesda medical research lab figures prominently in two investigations of morgue workers in Maine accused of selling dozens of brains without consent from next of kin.

The brains ended up at the Stanley Medical Research Institute, a nonprofit laboratory in Bethesda that has about 625 brain samples in its freezers. Researchers use the brains to study schizophrenia and bipolar disorder.

Maine Attorney General G. Steven Rowe and Paula Silsby, U.S. attorney for Maine, have opened separate investigations of the state’s medical examiner’s office in the case.

Byrne Decker, a lawyer representing the Stanley Institute in Portland, Maine, said yesterday that the absence of copies of consent forms does not mean consent was not given. He declined further comment.

The largest private research firm for brain disorders in the United States, the Stanley Institute has donated more than $160 million to other research groups and has sent more than 100,000 brain samples to other labs since the institute was founded in 1989.

It collects brains from various medical examiners’ offices, company officials said.

In 1999, institute officials made a deal with Maine’s medical examiner to obtain brains after postmortem work and hired Matthew Cyr, a funeral inspector, to solicit family members’ consent.

The institute paid Mr. Cyr $1,000 a month plus $1,000 to $2,000 for each brain collected — payments that totaled as much as $200,000 over four years.

The arrangement between the medical examiner’s office and the institute was permissible under Maine law, provided the next of kin gave verbal consent.

However, as many as 31 families say they didn’t agree to donate their loved ones’ brains or were misled to believe that only a small tissue sample, rather than the entire brain, would be removed.

Mr. Decker and institute officials said those charges are not true.

Families of brain donors have begun stacking up lawsuits against the Stanley Institute.

The state and federal investigations were spurred by a lawsuit in April against the Stanley Institute by Frank and Lorraine Gagnon. The Gorham, Maine, couple said the brain of their 28-year-old son was taken without permission after he died of a drug overdose in 2003.

The Gagnons and the institute this week agreed to a settlement, but lawsuits by other families are expected.

John S. Campbell, the Gagnons’ attorney, declined to reveal the terms of the settlement.

“Obviously, they do legitimate work,” Mr. Campbell said of the Stanley Institute. “The problem was, at least in this case, they didn’t provide full disclosure to the people involved.”

Mr. Campbell said Mrs. Gagnon agreed to donate a “snippet” of brain tissue from her son, A.J. Gagnon. Months after the funeral, she was shocked to learn that her son’s entire brain had been removed.

He blamed a combination of poor state oversight and greed.

“It’s a mixture of the two,” Mr. Campbell said. “The fact that it was so loosely regulated left it open to allow people to let monetary considerations interfere with what is ethical.”

Portland resident James Allen also plans to sue the institute, said his attorney, Craig Rancourt.

Mr. Allen, 65, says Mr. Cyr contacted him after his wife, Carol, drowned in a swimming pool in 2001. Mr. Allen consented to donate a small tissue sample of his wife’s brain. He recently learned from the attorney general’s investigators that her entire brain was removed.

“He was absolutely dumbfounded and devastated, and his family was also,” Mr. Rancourt said.

“These people need to be taught a lesson that they just can’t do these things. It’s pretty outrageous conduct.”

Gordon Smith, executive vice president of the Maine Medical Association, said the publicity surrounding these cases will cause more people to come forward.

“When people … realize they were one of those families involved, I would expect absolutely there would be more lawsuits,” said Mr. Smith, who has practiced medical law for 25 years.

The Boston Globe reported about Maine’s brain-harvesting investigations yesterday.

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