"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 exchange hands at some point during the organ donation process. While all states prohibit the sale 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."
