Researchers Steal Brains Without Permission

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DARocksMom

Sun, 24 Oct 2004 19:29:35 EDT

Subject:Fwd: Researchers Steal Brains Without Permission-

 

 

Researchers Steal Brains Without Permission

 

ALLIANCE FOR HUMAN RESEARCH PROTECTION

Promoting Openness and Full Disclosure

www.ahrp.org

 

FYI

 

An investigative series of articles in Sunday's Portland Press Herald

(excerpt below) reveals that the state's funeral inspector had

harvested and

shipped 99 brains--one third without informed consent--to the Stanley

Foundation. The Stanley Foundation maintains a brain bank of about 560

brains of people diagnosed with schizophrenia and bi-polar disorder,

many of

who committed suicide.

 

In the UK a similar scandal has led the government to pledge tightened

legal

protection: BBC reports that the government indicated its intention to

" 'enshrine the principles' of informed consent - changing the emphasis

away

from simply acting if relatives object, towards having to gain explicit

consent in every case. "

See: BBC. Q & A: Brain 'theft' inquiry 2003/05/12 See:

http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/3021367.stm

 

The Stanley Foundation is headed by E. Fuller Torrey, a psychiatrist

whose

controversial viral theory of schizophrenia has not been validated by

any

confirmatory evidence. The Stanley Foundation is the largest private

funder

of mental illness research: providing $40 million a year in grants for

research in schizophrenia and manic-depression--whether the research

meets

ethical standards or not.

 

For example, Stanley has funded symptom provocation experiments (a.k.a.

" challenge studies " ) that deliberately exacerbated patients' disabling

condition in order to take brain scans during a psychotic episode. Our

complaints about such inhumane experiments on mentally disabled human

beings

aroused public condemnation, forcing the director of the National

Institute

of Mental Health to shut down 29 such experiments in 1998. But that has

not

changed the schizophrenia research culture.

 

Until the Gagnon family filed a lawsuit against Mathew Cyr, the state's

funeral inspector, the Stanley Foundation, and Torrey, charging them

with

taking their son's brain without their permission, the Stanley

Foundation

never disclosed how it acquired its brains. Private research

foundations

are accountable to no one except themselves. AHRP believes that invites

abuse.

 

According to the Portland Herald, the Stanley Foundation paid Cyr

$150,000

for his services. The arrangement was approved by the state Chief

Medical

Officer who had been approached by Dr. Torrey.

Of note: The Stanley Foundation is not accredited by the American

Association of Tissue Banks, a national organization that sets ethical

standards.

 

The Herald reports:

" Some of the consent forms obtained by the newspaper indicate that

phone

calls between Cyr and the families were supposed to be tape-recorded.

However, someone crossed out the word " recorded " on the form and wrote

the

word " witnessed. "

 

" Dow, of the Attorney General's Office, said the state does not have

any

recordings of the phone calls. Nor are state officials aware of any

such

recordings. Lorie Stevens of Bucksport was listed as the witness on 65

of

the 68 forms. In any dispute with a donor family, the relationship

between

Cyr and Stevens could undermine efforts to show that the brains were

obtained with the families' clear permission "

 

Court documents reveal rather tawdry business transactions. For

example, to

increase the number of brains sent to the Foundation, Torrey offered

greater

and greater financial incentives to Cyr. Torrey put a higher price tag

on

the brains of people diagnosed with schizophrenia and bi-polar disorder

($2,000) compared to those diagnosed with depression ($1,500); and he

paid

Cyr an extra $500 for obtaining a donor's psychiatric records.

 

In a March 2001 letter, the Herald reports: " Torrey also encouraged Cyr

to

take advantage of his state government connections. He suggested that

Cyr

offer a modest sum of money to a clerical employee in the Medical

Examiner's

Office to send the request letters on office stationery.

 

" It is our experience with San Diego and Seattle that when a record

request

is sent out on (medical examiner's office) stationery at the time of

death,

the response is excellent and very rapid, " Torrey wrote.

 

No employee of the Medical Examiner's Office sent such letters,

according to

Dow, spokesman for the attorney general. Greenwald, through the

spokesman,

said she is not aware that any employee in her office was asked to do

such

work.

 

In his March 2001 letter to Cyr Torrey wrote: " Given your energy and

track

record in obtaining specimens, it seems reasonable that you could

average

about two normal controls and one case per month, which if you also

obtained

records, would gross $5,000-$5,500 per month although we can cover

whatever

you can obtain. Obviously some months might be better and some worse. "

 

In the US, a 1987 Uniform Anatomical Gift Act, prohibits the

trafficking of

organs for transplants, there is no federal law prohibiting the sale of

human organs for research. Given the lucrative financial incentives,

and the

absence of regulatory restraints, a cottage industry in brain

harvesting is

thriving in the US and the UK: many of the brains are acquired by

academic

research institutions were acquired without the knowledge or informed

consent of surviving relatives.

 

One might question the validity of the legal double standard applied to

organ harvesting for transplantation compared to research--inasmuch as

organ

transplants save lives, while one is hard pressed to point at any

clinically

significant diagnostic or therapeutic improvements as a result of these

brain studies.

 

See: PORTLAND PRESS HERALD series. Ethical problems plagued brain

donations

in Maine By KEVIN WACK, October 17, 2004 online at:

http://pressherald.mainetoday.com/news/state/041017brain.shtml

 

Of further note: The Stanley Foundation also bankrolls the Treatment

Advocacy Center (TAC) a lobbying organization that exploits the

perception

that mentally ill patients are violent, in order to promote state

involuntary commitment laws for mental patients to allow them to be

" treated. " The tactic says much about ruthless prophets whose

arrogant

certainty about what's good for others leads them to justify any means

toward achieving those ends.

 

As the facts about psychotropic drug effects continue to unfold, it

will

become evident that more often than not, the drugs, not the disorder,

are

the catalyst for violent behavior.

 

See, for example:

Psychiatrist: Mom was depressed Hearing held for Polk woman charged in

fire

death of her children By Matt Birkbeck. October 19, 2004

http://www.mcall.com/news/local/all-b1_1childdeathsoct19,0,4608449.story?col

l=all-newslocal-hed

 

Another example:

" Her 14-year-old daughter, Dominique, died in April 2003 after jumping

into

a canal. Slater blames her death on the four different antidepressants

her

daughter was put on in less than a year. She said the drug companies

failed

to warn of suicide risk and that Dominique's doctors failed to

carefully

monitor her.

 

Dominique's depression began during the summer of 2002. She told her

parents

she had taken an Internet survey sponsored by a drug company that

seemed to

confirm her depression and asked to see a doctor.

 

The family physician agreed Dominique was depressed and put her on an

antidepressant. A month later, she tried to kill herself but failed.

 

A series of antidepressants and hospitalizations ensued. Finally, after

being put on the drug Effexor... Days later, her daughter was dead.

 

Sacramento Bee: Warning spurs caution on antidepressants in kids By

Dorsey

Griffith, September 27, 2004.

http://www.sacbee.com/content/news/story/10892887p-11810493c.html

 

 

Contact: Vera Hassner Sharav

212-595-8974

veracare

 

http://www.boston.com/news/local/maine/articles/2004/10/17/brain_harvesting_

operation_raises_questions/

THE BOSTON GLOBE

Brain-harvesting program faulted

Parents say donation lacked consent

By Associated Press October 18, 2004

 

PORTLAND, Maine -- A Gorham couple's claim that their dead son's entire

brain was donated to a research laboratory in Maryland without their

consent

points to a lack of oversight of brain harvesting at the state medical

examiner's office, according to the Maine Sunday Telegram.

 

The newspaper said its investigation found that 31 of 99 brains that

were

shipped from Maine to the Stanley Medical Research Institute in

Bethesda,

Md., from 1999 to 2003 lacked consent forms that would provide written

proof

that family members authorized the donations.

 

The brain harvesting was coordinated by Matthew Cyr, who was then the

state's funeral inspector. The Telegram said the Stanley Institute paid

Cyr

$1,000 to $2,000 for each brain he sent there, and that records show

that he

collected more than $150,000 from the laboratory during the four years.

Cyr resigned his part-time post as funeral inspector last August. Four

months earlier, he was named, along with the private research

laboratory and

its founder, as a defendant in a lawsuit filed by Frank and Lorraine

Gagnon

in Cumberland County Superior Court.

 

The Gagnons said they agreed to supply a 1-inch or 2-inch sample of the

brain of their son, A.J. Gagnon, who died last year of a drug overdose.

Lorraine Gagnon said she was stunned to learn that her son's entire

brain

had been taken.

 

''This is a kid I brought into the world and loved and cherished, and

in

death they have no right to touch him, " Lorraine Gagnon said.

Officials with the Stanley Institute, renowned for its research into

schizophrenia and bipolar disorder, are fighting the lawsuit. The lab's

founder, Dr. E. Fuller Torrey, concluded in a memo last year that

Lorraine

Gagnon consented to the brain removal, then changed her mind.

 

''This is the first such instance in the 560 brains we have collected

to

date but should be expected to occur occasionally, given the difficult

circumstances of death for a family. We will therefore return the brain

to

the funeral home as Ms. Gagnon requests, " Torrey wrote.

 

In June 2003, a brain, identified by the Stanley Institute as A.J.

Gagnon's,

was sent to a Portland funeral home for cremation.

 

Maine's connection with the Stanley Institute came about after Dr.

Margaret

Greenwald was hired as Maine's deputy chief medical examiner in 1997.

Greenwald, now chief medical examiner, had done work for Torrey's brain

bank

while she was in San Diego and he approached her in 1998 about

supplying

brains from Maine.

 

Greenwald declined the offer but suggested that Torrey work with Cyr,

who

went on to coordinate the brain harvesting work within the medical

examiner's office in Augusta.

Cyr, who now works as a police officer in Bucksport, still has a

contract

with the medical examiner's office to answer its phones after business

hours, when reports of fatal accidents, drug overdoses, and suicides

often

come in.

Cyr did not respond to the Telegram's requests for an interview and has

not

responded to the suit.

 

Chuck Dow, spokesman at the attorney general's office, said there is no

evidence that any laws were broken during the period when Cyr supplied

the

research laboratory with brains, but several bioethicists said lax

oversight

and record-keeping can invite problems.

 

C Copyright 2004 The New York Times Company

 

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