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A Dispute Over Brain Donations
Families Allege Improper Consent in Lawsuits Against Bethesda Institute

By David Snyder
Washington Post Staff Writer
Thursday, June 30, 2005

For nearly a decade, a most unusual commodity has arrived regularly at the Stanley Medical Research Institute in Bethesda: human brains, packed in dry ice and sent by FedEx from coroners across the country.

Removed from the skulls of the recently dead to preserve their value as objects of scientific research, the brains are catalogued, frozen and sliced into thin samples, which are then shipped to researchers around the globe seeking to unlock the mysteries of schizophrenia and other illnesses.

Even before establishing one of the nation's largest so-called brain banks at the nonprofit Stanley institute, psychiatrist E. Fuller Torrey had built a name for himself in the psychiatric community for his theories about the origins of schizophrenia and methods of treatment for the mentally ill.

But nothing in Torrey's past as a researcher and an author prepared his admirers, or his critics, for the allegations contained in a growing number of lawsuits filed in Maine. The lawsuits, the most recent of which was filed June 17, allege that a contractor for SMRI obtained brains from cadavers in that state without receiving full consent from family members.

Some families who filed suits say the contractor told them that he would take only small samples of brain tissue but then took entire brains. At least one family says in a suit that SMRI did not have consent to take any tissue.

"I felt so violated," said Lorraine Gagnon, who claims that the brain of her late son, A.J. Gagnon, was taken without her permission. "I still have nightmares of my son calling me, saying, 'Mom, help.' Those don't go away."

A criminal probe by the Maine attorney general's office is underway, and a spokesman for that office confirmed that the U.S. attorney's office is also investigating the matter.

No one alleges that Torrey or SMRI profited financially from the arrangement. But if the allegations are true, SMRI's actions would violate the central tenets of organ donation, ethicists say.

"There's a general repulsion to the idea of people taking out organs without permission, and I don't think you have to have any formal training in ethics to understand that that's repellent," said Paul Lombardo, director of the Program in Law and Medicine at the University of Virginia's Center for Biomedical Ethics.

Through two attorneys -- one in Maine and one in Bethesda -- SMRI officials declined to comment on the specifics of the lawsuits. In court documents and correspondence with John Campbell, the Gagnons' attorney, SMRI officials have maintained that the institute and contract worker Matthew Cyr acted legally and ethically in obtaining consent.

"SMRI has never knowingly obtained any donation of brain or other tissue without the full consent of available next of kin," the institute said in a written statement.

Torrey did not respond to an e-mail request for an interview. A request to speak with him left with Thomas V. Laprade, a Portland, Maine, lawyer representing SMRI, also went unanswered. SMRI general counsel Lori Keenan declined to discuss the lawsuits, saying the institute's written statements constituted its response.

"We have a policy of not making statements to the press," Keenan said. "We're just not at liberty to say more."

In an affidavit filed as part of a lawsuit alleging that SMRI took the brain of a Freedom, Maine, man without full familial consent, Torrey said: "In connection with my follow-up communications with donors' families, neither Matthew Cyr's professionalism nor the veracity of the consents he obtained was ever questioned."

Later in the affidavit, Torrey called the allegations of improper consent "false and hurtful and they defame both SMRI as an organization and me."

An attorney for Cyr, the contract worker for SMRI, did not return calls seeking comment. Cyr stopped working with SMRI in 2003, according to Torrey's affidavit. Torrey did not specify in the affidavit why Cyr stopped working for the institute. Cyr was employed part time by the Maine medical examiner's office during at least part of the time that he worked for SMRI, Torrey said in the affidavit.

The allegations have sent a shock wave through the national organ research and transplant community, already reeling from revelations of the alleged sale of human corpses in California and the alleged use of bodies for Army land mine tests without family consent in Louisiana.

In April, UCLA suspended its donated body program amid allegations that some of the bodies were sold. And last year, a donor's family sued Tulane University in New Orleans, alleging that the body was shipped to a middleman who sold at least seven bodies to the U.S. Army, which used them in land mine experiments.

Concerns are growing that the incidents will suppress an already stressed market for research organs.

Such high-profile cases put at risk recent gains in encouraging people to donate their organs, said Ronald Zielke, director of the Brain and Tissue Bank for Developmental Disorders at the University of Maryland.

"This is an extraordinarily delicate area. It's like walking on eggshells," Zielke said. "If there's a negative attitude that permeates the country regarding tissue donation, it will be a great disservice to everybody."

The controversy surrounding SMRI's brain bank began in 2003. After A.J. Gagnon died of a prescription drug overdose in his parents' home, his brain arrived at the institute's Bethesda laboratories. It was labeled with a case number -- S-538 -- and frozen and catalogued to await requests from researchers.

For SMRI, the transaction was routine. A phone call that June changed everything.

Lorraine Gagnon rang up an SMRI secretary, saying that the institute had wrongly indicated on correspondence with her that her son was schizophrenic.

"He's not," Lorraine Gagnon remembers saying. The conversation continued, with the secretary thanking Gagnon for the family's donation.

"My God, it sounds like you have my son's whole brain," Gagnon recalls saying, shocked.

"We do," Gagnon remembers the secretary saying.

Lorraine and her husband, Frank Gagnon, filed a lawsuit in Cumberland County, Maine, claiming that SMRI did not obtain their consent to remove their 28-year-old son's brain.

The suit was followed by 10 others. A plaintiff's attorney recently asked a judge to certify a class-action lawsuit against SMRI and Torrey. The attorney alleges in court filings that the Stanley institute may have obtained as many as 99 brains from Maine families without proper consent. The most recent of the 11 civil suits, filed June 17, alleges that SMRI took the brain of Ernest Marceau in 1999 without contacting family members.

According to documents obtained as part of the Gagnons' lawsuit, Cyr was paid $1,500 to $2,000 for every brain he delivered to the Stanley institute. Letters from Torrey to Cyr show that Torrey increased the incentive for Cyr to obtain more brains. In a March 2001 letter, Torrey offered Cyr $2,000 for the brain of each person with diagnosed schizophrenia or manic-depressive illness. One year earlier, Torrey wrote that he would pay Cyr $1,000 for every brain, schizophrenic or healthy. In an August 2003 letter, Torrey, noting that Cyr's brain acquisitions were "dramatically down," increased the incentive again, offering $2,500 for each diseased brain and $1,500 for normal brains.

Founded in 1995, the nonprofit research institute has one of the world's largest collections of brains from schizophrenics. Over the last decade, the institute has provided brain samples to more than 160 researchers in more than 20 countries.

In court depositions and in a telephone interview, Lorraine Gagnon said Cyr called her about 11 hours after her son's death and identified himself as an agent of the Stanley institute. She said she gave permission to take small samples of her son's brain but specifically noted that she did not want the whole organ taken because she was concerned it would alter his appearance at a public viewing of the body before his funeral.

"I said that they were welcome to take a one-by-two-inch slice," Gagnon told The Washington Post. "Well, that small sample turned into a whole brain."

Gagnon said that until the June 9, 2003, telephone conversation, she believed that only slices of her son's brain were taken.

In correspondence with the Gagnons' attorney, SMRI officials said: "Our review indicates that SMRI and its representatives acted properly and entirely in good faith throughout their communications with Mrs. Gagnon about the donation of her son's tissue to SMRI."

Plaintiffs' attorneys have acknowledged that Cyr filled out consent forms for donations, but they say that those forms do not reflect the families' conversations with him. Where Cyr indicated that the Gagnons, for example, granted consent to donate their son's brain, the Gagnons contend they did not.

SMRI settled out of court with the Gagnons for $48,000, said Campbell, their attorney. SMRI did not admit any wrongdoing in the settlement.

Amid the growing demand for research organs -- and relatively static supply -- is a confusing welter of state and federal laws governing organ trade.

Laws on the sale and trade of human body parts can vary widely from state to state. Some states, such as Virginia, strictly forbid the sale of virtually all body parts. Other states are not so clear.

It is not uncommon for money to change hands at some point during the organ donation process. While all states prohibit the sale of organs for transplantation, organs used for research are in a grayer area, said Robyn Shapiro, director of the bioethics center at the Medical College of Wisconsin.

Laws governing organ trade are "a huge mess," Shapiro said.

It is not rare for middlemen to receive a fee for obtaining organs, even if the organs are going to a nonprofit research entity, experts said. Some ethicists frown on per-organ payments, saying they invite conflicts of interest.

In written public statements, SMRI defended its payments, saying obtaining tissue is "laborious, painstaking work that requires sensitivity to the bereaved family and persistence in obtaining medical records that can extend for weeks and months after the donation. . . . To compensate for this work is legal and ethical."

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