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Local brain bank helps global research

5/2/2007

 

Ken Alltucker

Still, Bingham's job requires speed.

Within an hour, he meets his team in Sun City, reviews medical charts and assembles the tools of his craft.

Four slabs of dry ice.

Formaldehyde in plastic containers.

Scalpels, saws and other sharp instruments.

All the team needs is the corpse, which arrives minutes later, covered in a hospital gown, ruby red polish on the toenails.

"She's a normal control (disease free)," Bingham says of the 90-year-old female donor who died at a Tempe senior care facility moments before the early-morning page. "We're ready."

The Sun Health Research Institute autopsy team is dispatched at all hours, day or night. Its job is simple: harvest a donor's brain, bones, organs and other tissue as soon after death as possible. If the vital organs are extracted more than four hours after death, the tissue can be useless for research.

The Tempe woman is one of 2,079 who have agreed to donate their brain, body, or both to Sun Health. The program includes "normal control" donors without disease, as well as donors afflicted with Alzheimer's, Parkinson's, cancer or other age-related disorders.

Donors are the lifeblood of Sun Health Research Institute, which operates a nationally recognized tissue bank in Sun City. Valley residents surrender their bodies at death to Sun Health to bring hope to the living.

Donor flesh is processed by Sun Health's autopsy team, stored at a new lab in Sun City and sent to researchers worldwide. Scientists and physicians from Japan to Germany examine it to study everything from cancer to Alzheimer's. The program has yielded potential Alzheimer's remedies such as cholesterol-lowering and anti-inflammatory treatments that are in clinical trials.

But there are challenges.

The tissue must be fresh. That means Bingham and other pathology assistants must be ready to respond round-the-clock, ensuring that the donors' bodies are collected, cut and frozen right after death. The quality of the tissue ensures Sun Health can collaborate with world-class researchers to land federal research grants at a time when such funding is difficult to come by.

Sun Health also maintains close ties with its donors. That means explaining the brain-and-body donation program to potential new donors via community outreach programs and keeping tabs on existing donors with regular medical checkups. The checkups are necessary to build a medical history, a valuable tool for research.
Sun Health Research Institute President and Senior Scientist Joseph Rogers said the amount varies depending on the research organization and purpose.

A pharmaceutical company can expect to pay more than a University of Arizona or Mayo Clinic researcher.

"We review every request. We want to know what (the scientist) will use the tissue for," Rogers said. "It is a very precious gift, and we are not going to have it used for a frivolous reason."

A donor's choice
Sun Health officials say a range of factors motivates donors.

Some say they just want to aid general research efforts. Rather than being cremated or buried, they want some good to come from their remains.

Others have a specific disease they want to help fight, so they request that their body be used to research that disease.

Sun Health's wide roster of donors includes Marilyn Butterfield, 70, of Peoria. The retired nurse signed up a decade ago to donate her brain because she wanted to help researchers find out more about her frustrating disorder, restless leg syndrome, or RLS.

Patients who suffer from the neurological disorder describe a discomfort or a creepy-crawling sensation along with a strong desire to move their legs. It can sap a patient's quality of life.

"It sounds so silly, the name," Butterfield said. "But the misery I went through in trying to get this diagnosed . . . I got so sleep-deprived, I could barely function."

She learned about Sun Health's brain-donation program after attending the institute's community open house. She chatted with her doctor, Charles Adler of the Mayo Clinic, who was studying restless leg syndrome. Today, Butterfield manages her restless leg syndrome by staying active and taking medications not available a decade ago. A member of the Restless Leg Syndrome Foundation board of directors, Butterfield believes experiments conducted with tissue from Sun Health's tissue bank and a Harvard University brain bank contributed to discovery of the new drugs.

Butterfield has encouraged others, including her husband, Fred, to donate their brains and organs to Sun Health Research Institute.

"For a while, my friends would hate to see me arrive," Butterfield said. "I went to cocktail parties with applications for brain donations under my arm."

High market value
The donated brains and organs can command big dollars in the open market.

Brains, bones and eyeballs can sell for tens of thousands of dollars to researchers. For example, a cadaver can be mined for different parts, with skin selling for more than $36,000 and bones for $80,000, according to a research paper written by Professor Lori Andrews of the Chicago-Kent College of Law.

Rogers said Sun Health sends 90 percent of its tissue samples to private, non-profit entities. He said Sun Health typically passes along the cost of securing the tissue to researchers affiliated with universities or non-profit institutions. Sun Health's brains and organs have been sent to more than 60 cities in the United States and abroad, including to researchers in Japan, Australia and Italy.

Arizona researchers have used the tissue to study everything from glaucoma and macular degeneration to tests for artificial joints.

The Core Institute, a group of orthopedic doctors in the northwest Valley, uses leg and pelvic bones to study bone strength and fractures and joint replacement surgery. The startup research institute, around for less than one year, credits Sun Health with its research advances.

"Sun Health Research Institute provided the foundation of an established research center in the northwest Valley," said Kristine Csavina, director of the SHRI-CORE Orthopedic Research Labs in Sun City. "We benefit from the brain and full-body donor program and from the established research centers in arthritis and Parkinson's disease. This has allowed us to quickly establish our research programs in our two labs over the course of the past year."

Core plans to use the knowledge gained from the bone studies to develop new medical devices to help patients. Possible partners include established medical-device companies, such as Medtronic in Tempe.

Researchers at the University of Arizona and UCLA have received Sun Health tissue, as have pharmaceutical companies such as Pfizer, Eli Lilly and GlaxoSmithKline.

"We do provide tissue for for-profit pharmaceutical companies. That helps us cover the costs of our program," Rogers said.

Perhaps Sun Health's closest ties to Big Pharma are through GlaxoSmithKline, which gave Sun Health a $1 million grant based on the quality of the brain and tissue bank, Rogers said.

Rogers said GlaxoSmithKline's grant has "no strings attached," but he added that Sun Health does not charge the pharmaceutical company for tissue samples.

GlaxoSmithKline allowed Sun Health to more efficiently run its tissue bank, hiring pathology assistants who are on call 24 hours a day to perform autopsies on donors.

GlaxoSmithKline is using the Sun Health-provided tissue to study Alzheimer's disease and conduct genomics studies to discover which factors may make people susceptible to the degenerative disease.

"We are, in my opinion, getting toward the end of that dark tunnel that is Alzheimer's disease," Rogers said.

Ethics issues
Rogers acknowledged that the donation process has become more time-consuming with more red tape.

When Rogers started the brain bank two decades ago, the donor consent form consisted of just a half-page questionnaire. Today, the consent form is 13 pages.

"It has become more and more important that people know exactly what they are getting into," Rogers said.

Ethics experts stress that donor banks such as Sun Health need to ensure that donors know how the tissue will be collected and used. Measures such as videotaping people as they offer consent or securing consent over a period of time to ensure a person isn't making a snap judgment are sound policies.

"I would recommend a multi-level informed consent practice where the individual can't consent and get the information on the same day," said Mark Rothstein, director of the Bioethics Institute at the University of Louisville.

He also recommended that a family member, trusted friend or attorney be on hand to ensure that donors know what they are doing. That is particularly important if a donor shows any signs of age-related impairment such as Alzheimer's or dementia.

"You have to get consent before people have any onset of the disease," Rothstein said. "People have been donating their bodies to science for altruistic reasons for a long time. Those who would use those bodies must have an extraordinarily high standard of care, with the dignity and respect they (donors) deserve."

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