Dispute draws attention to organ banks' practices

Consent, payment policies at Bethesda site probed

By Fred Schulte

Sun Staff

January 17, 2005

She died Christmas Eve at age 3 of a rare disease that destroyed her spine.

By morning, her parents, hoping to turn their tragedy into a better life for someone else's child, had donated her brain to the University of Maryland Brain and Tissue Bank for Developmental Disorders for use in medical research.

"That was a tough one," said H. Ronald Zielke, director of the unit, which arranged to ship the girl's brain to Baltimore from her hometown in Pennsylvania.

But it's not an unusual decision. "A lot of times, the family wants to leave a legacy to help future generations," Zielke said.

Hundreds of brain and tissue banks like Maryland's have sprung up in recent years across the country, operating under varying state laws and self-imposed regulations. Experts in the field agree that most of these repositories act ethically and respect the wishes of grieving families.

But a dispute in Maine is drawing attention to the macabre aspects of this corner of medicine, in which research institutions rush to harvest body parts, often within 12 hours of death, and pay service fees to those who assist in procuring them.

The U.S. attorney's office in Maine is investigating the harvesting of brains shipped to the Stanley Medical Research Institute in Bethesda. The institute offered a Maine man $1,000 to $2,500 each for supplying brains between 1999 and 2003, according to letters sent to the man by Dr. E. Fuller Torrey, the institute's associate director for laboratory research.

One Maine woman alleged in a lawsuit that her 28-year-old son's entire brain was harvested, even though she had consented to removal of only a small piece of it. The institute said it believed it would have prevailed in court but settled the suit for $47,500 to avoid further costs of litigation.

In a written statement this month, Torrey said the institute, which boasts the world's largest bank of brain tissue from people with schizophrenia and manic-depressive illnesses, "has always acted ethically and in good faith and has never knowingly obtained any tissue donation that was not obtained with full consent."

Though federal laws prohibit the direct sale of human bodies or organs, money often changes hands in the form of fees for handling and preparing specimens. Those fees are usually paid to pathologists who perform autopsies or to funeral directors.

The University of Maryland tissue bank pays about $650 on average to obtain a brain, but these fees can run as high as $1,500, depending on the donor's location and other factors, Zielke said.

He and several others involved in tissue collection said they won't pay harvesters a bounty for each organ they bring in, however, and criticized the practice that surfaced in Maine.

"This is horrific. It has the potential to severely damage people's confidence in donating," said Dr. David R. Fowler, Maryland's chief medical examiner. "This is a critical part in saving lives."

Fowler said that professionals must be paid for their work in preparing bodies and tissue samples for distribution to tissue banks. But he said the Bethesda institute made a "mistake" by setting fees per specimen.

At one point in 2003, Torrey said the institute would pay $2,500 for each brain of a person diagnosed with schizophrenia or bipolar disorder and $1,000 for normal brains, according to a letter Torrey wrote to Matthew Cyr, the part-time medical examiner's office employee in Maine. In total, Cyr was paid $150,000 for supplying 99 brains.

"I think that's unethical. It puts greed in the way," Fowler said.

Maryland officials said they take a variety of steps to make sure organs are collected ethically.

The Maryland Medical Examiner's Office provides tissue only to the university's bank, which has a review board that sets ethical standards and is responsible for enforcing them. The brain bank is funded through the National Institute of Child Health and Human Development.

Families of the dead or dying are contacted by a physician, and then another person affiliated with the tissue bank comes on the phone to verify that the family gives full consent. After that, the donor's family is sent a letter thanking them for their gift, a final check to ensure that proper consent procedures were followed.

To avoid any improper financial incentives, the University of Maryland will not entrust the duty of harvesting the organ to the person who obtains the family's consent.

"There are checks and balances. We've had safeguards in place over the years," said Fowler.

"It is a betrayal of the families if there isn't proper consent," said Zielke. "We don't put any pressure on anyone to secure a certain number of cases."

Others in the field said they, too, depend on maintaining the public's trust to keep body donations coming in. While all pay fees to recover costs of obtaining a specimen, they said they strive to keep those fees reasonable and aboveboard.

Brent Bardsley, director of the Anatomy Gifts Registry in Hanover, said his nonprofit group obtains about 200 donated bodies a year, often from people who give their consent well in advance of death. It often pays funeral directors for their services, which can range from $3,000 to $4,000 each, according to Bardsley.

The registry then charges researchers a service fee to recoup these costs. He said researchers sign contracts promising to use the tissue only as outlined in their research proposals and not to resell it.

Most of the bodies he supplies are used in research to find cures for chronic diseases or in training surgeons in new techniques. He said the registry obtains written consent from the donor's next of kin after death, or gets it over the telephone and keeps a recording of the conversation as documentation.

For some donors, "We are an increasingly popular alternative to a traditional funeral. Our services are free," he said. "We don't do anything that would violate the public trust."

Trust underlies most donations, which often come from people such as the family of the Pennsylvania girl. Pointing to confidentiality laws, Zielke said he could not provide more details about the girl's condition.

He did say that the tissue bank works closely with relatives of people with a variety of rare medical conditions, such as Lowe Syndrome, an extremely rare genetic condition that causes physical and mental handicaps and death at a relatively young age.

"When you have a child with a terminal syndrome, you don't want to close the book. You want something good to come of it," said Mary Tietz of Minneapolis, who heads the Lowe Syndrome Association.

Her 7-year-old son has the condition, which she said strikes males and has been found in just 300 people worldwide. She and several other members of her group have agreed to donate the brains of their children after death because they believe brain studies will help others.

"A tremendous number of diseases originate due to a minor defect in the brain," said Zielke. "It is vitally important for us to understand what these defects are to correct them."

Zielke said brains are frozen in quarter-inch slices, and up to 25 researchers can take parts of a single brain for studies that might yield clues to why these diseases strike.

The frontal cortex, for instance, is involved in decision-making and is often used to study autism, he said. Other researchers use the hippocampus, the part of the brain involved in learning, and the motor cortex, the outer portion of the brain that controls walking and other movements.

The University of Maryland tissue bank has distributed brain parts to 385 researchers. With 1,800 specimens, the unit is one of the top four or five brain banks in the country. It obtains about 110 brains every year from outside the state and 30 to 40 from within Maryland.

While research institutions have collected tissue for a century or more, the field has grown rapidly along with organ transplantation programs, and so have worries of abuses.

In April, the University of California, Los Angeles suspended its willed body program amid allegations that some donated bodies were sold. In a second case last year, Tulane University in New Orleans was sued by the family of a donor whose body was shipped to a middleman. The company sold at least seven bodies to the U.S. Army, which used them in land mine experiments.

From 1967 until the mid-1980s, state laws governing tissue donations were identical. But many states have since amended their laws in the hopes of encouraging donations. As a result, standards vary by state, especially consent procedures that must be followed by medical workers at hospitals or medical examiners' offices.

Maryland's medical examiner by law can use a body solely to determine the cause of death and is not permitted to allow harvesting of organs, except by the University of Maryland tissue bank. The law also grants an exception for the taking of corneas, which can be used to help restore eyesight, so long as the medical examiner knows of no objection from the family of the deceased.

Other states are beginning to study whether to provide financial incentives as a means to spur organ donations, said Carlyle Ring, who heads a committee of the National Conference of Commissioners on Uniform State Laws, a group that promotes enactment of uniform state laws. He calls it a "contentious" issue.

While varying laws can cause some confusion, Ring said the system generally functions well.

"There obviously are abuses in every area of life," he said. "The bad actors are relatively few in number, and they give the rest a bad name."

Copyright © 2005 The Baltimore Sun.

This article posted February 15, 2005