Don’t Call Them Guinea Pigs

$100 REWARD FOR THE CAPTURE OF HUMAN ALVEOLAR macrophages via bronchoscopy from any normal, healthy, nonsmoking (tobacco or otherwise) Homo sapien. For an appointment call Janet,”

“Pressure up? Do you have high blood pressure? The Hyperten-sion Division is presently seeking volunteers.”



The personal ads that appear in Center Times, the University of Texas Health Science Center newspaper, may lack the steamy appeal of those in the Dallas Observer, but the rewards for those who re-spond are likely to be both more lucrative and intellectually uplifting.

Leasing one’s body to science, a pint of blood or a beaker of urine at a time, nets some volunteers several hundred dollars monthly-but just as important, gives them the satisfaction of knowing they’re helping to advance medical science. Research conducted on volunteers at the Health Science Center has already led to many medical breakthroughs of international importance, including the Nobel Prize awarded last October to doctors Michael Brown and Joseph Goldstein for their research on cholesterol metabolism.

Volunteers for research projects include both healthy “normals” and victims of rare and/or chronic health problems for which there is no cure or for whom conventional therapies are not effective. Medical students, lab technicians, seminary students, family members of chronically ill patients, and a variety of others including a young North Dallas attorney and, for a while, a priest from a parish in Piano are among those “normals” who’ve received payment of as little as five dollars for one sample of blood to $750 for several weeks of more complicated research.

Chronically ill volunteers are usually not paid for participating, but receive free treatment and free hospitalization in exchange for their cooperation. Studies on diabetes, osteoporosis, heart disease, and virtually all the body’s systems and organs regularly require the help of both types of volunteers.

Don Watenpaugh, a graduate student at Southwestern Medical School working toward his Ph.D. in human physiology, is what is known around the medical center as a “professional normal.” In addition to participating (for free) in almost all the experiments done in the space medicine lab where he conducts his own research, Waten-paugh watches the bulletin boards at the medical center and the Center Times for pleas for volunteers. He estimates that he’s earned more than $1,000 from volunteering over the past two years.

Watenpaugh has the assurance of the Health Science Center’s human research review committee (a council of physicians, lawyers, clergy, and others), that the research in which he’s invited to participate has been carefully evaluated with regard to his safety. Before a research project is initiated , a faculty member must submit a protocol detailing his intentions and hypothesis, and that protocol must be approved by the research review committee, which rules on the project’s safety and scientific merit and determines whether it is in accordance with guidelines set by the National Institutes of Health, the organization currently providing the Health Science Center with $1.7 million in federally funded research grants.

Before agreeing to participate in a project, Watenpaugh carefully reads the consent form all volunteers must sign for each research project. In that contract, which the volunteer is free to break at any time, the project procedure is carefully explained in layman’s terms along with any potential dangers or side effects the researchers can anticipate.

As a volunteer in the space lab, Watenpaugh works with doctors Gunnar Blom-qvuist and Drew Gaffney (who is scheduled for a space shuttle flight in early 1987). Their work is sponsored by NASA and deals with a variety of subjects including the effects of weightlessness on the cardiovascular system. Weightlessness can be simulated in the laboratory by keeping a subject’s body positioned in a five-degree, head-down tilt. In this position the cardiovascular system is fooled into thinking the forces of gravity are absent and responds with increased blood flow and volume. Aside from benefiting the space program, Watenpaugh says research like this helps scientists better understand how the body’s systems work.

Watenpaugh picks up thirty dollars every few weeks selling pints of blood to various labs, but is careful not to commit to too many research projects in too short a period because of possible health hazards and because some tests might influence the results of other experiments. He says he’s also learned through experience to consider the discomfort and possible side effects involved in procedures in light of the payment offered.

One project that offered a hundred dollars for a sample of bone marrow to be collected through an extremely painful procedure involving inserting a needle through the pelvic girdle didn’t appeal to him. “I didn’t need a hundred dollars that bad,” he says. Another project that was to compare the volume of blood flow to the brain in schizophrenics and in normal volunteers involved inhaling the radioactive gas xenor. That made him apprehensive, he says, but he participated anyway-once.

Even choosier than the volunteers are the researchers. Many projects require that volunteers meet quite specific criteria. An ad placed by the medical school’s affective disorders unit for a depression study solicited volunteers with no history of clinical depression. After seven months of advertising (“Coping, psychologically healthy volunteers needed for research on how people cope with everyday problems”), only sixteen normal volunteers had been found.

Volunteers of a variety of ages with many different characteristics are needed for an assortment of projects, but generally the “most wanted” volunteer is thirty-five to fifty-five years old. Individuals in that age bracket are hard to come by, researchers say, because they normally don’t have much free time to devote to this type of project.

Mark Fulmer, now a radiology resident at Baylor Hospital, was looking for some quick cash to finance his honeymoon when he inquired about participating in a sleep lab study supervised by doctors John Herman and Howard Roffwarg that was meant to determine how, if at all, what one perceives during the day affects dreams.

This was a study with a tough job description: Fulmer would have to dream in color, awaken quickly, be able to remember and describe his dreams, and then fall easily back to sleep. Researchers offered him two “trial sleeps” to prove his talents and sent him to bed in the sleep lab, a small efficiency apartment in the medical school. The first night his sleep was uninterrupted. The second night fifteen or twenty electrodes were taped to his skull to enable researchers to monitor his electroencephalograph (EEG) and eye movements.

After the second night researchers were convinced that Fulmer was a first-rate dreamer, able to sleep well under their conditions. They hired him for the experiment. He was issued a pair of what looked like welder’s goggles with the lenses split vertically into two halves, one red and one green. He was to wear them during the day at all times, removing them only in the sleep lab in total darkness.

Fulmer spent sixteen consecutive nights in the lab, electrodes attached to his skull. When the researchers could tell by the change in brain waves that he was dreaming, he was awakened by a speaker near his bed. Then, without turning on a light or getting out of bed, he’d respond into a microphone to researchers’ questions broadcast into his room. The researchers would try to determine whether Fulmer’s description of his dream corresponded with the eye movements they had monitored with the EEG. Fulmer says the procedure didn’t make it difficult for him to sleep or make him feel nervous, but sometimes he did have trouble recalling his dreams. “And one night,” he says, “I didn’t want to tell them so I said I didn’t remember.”



FULMER SAYS it was inconvenient and “a bit socially confining” to wear the goggles all the time. He says people were constantly telling him he looked like a bat and asking if he’d spilled some chemical in his eyes. He and his fiance didn’t go out much during the two-week project; he wasn’t interested in watching movies in green and red. But overall it was worth it-he accepted his payment of $600 and enjoyed his honeymoon ungoggled, debt free, and in living color,

Although only a fraction of the research that goes on at the Health Science Center takes place on an inpatient basis, it is the General Clinical Research Center, a thirteen-bed mini-hospital opened at the Health Science Center in 1974, that can be considered the hub of the experimentation that takes place at the medical center. The GCRC is one of seventy-six such units in the nation and six in Texas established and funded by the National Institutes of Health to provide a controlled environment for the study of human disease.

A tour of this facility brings the whole idea of medical research more clearly into focus. Research conducted on patients who agree to participate in projects at the GCRC helps speed along a testing and refining process that often takes years and, says director of the center Dr. Charles Y.C. Pak, is especially rewarding for the investigators who conduct work there because more of what they do has an immediate impact; they have the opportunity to help human beings who might not have another chance.

Located on the west end of the seventh floor of Parkland Hospital, the GCRC has the no-frills, narrow-hailed look of the rest of the institution. There’s no cable TV or choice of bottled waters to enjoy with lunch, but there’s no shortage of individualized attention, either.

Each patient’s meals are prepared separately in the GCRC’s own shiny, stainless steel metabolic kitchen according to the specifications of the physician-faculty mem-ber conducting the research. For many types of research, consistency in the diet is of paramount importance in order to monitor the body’s functions.

A piece of toast wrapped in cellophane on a tray ready to be taken to a patient has one corner missing; it was carefully shaved away to make the slice conform to the standardized serving of twenty-five grams. Eggs vary so much in weight that the kitchen staff must mix enough together to make a gallon and then carefully remove fifty-gram “eggs” to serve with patient breakfasts.

Some foods are omitted from patients’ diets because their makeup is inconsistent. The outer leaves of a head of lettuce, for example, are of a different metabolic composition than the leaves from the inner parts of , the head.

Generally, the only meats served in the GCRC are tuna, chicken, and beef, because these are the easiest to measure. Canned foods are too high in sodium, so they aren’t served. Meats and vegetables are weighed raw and their weight recorded to the gram or the tenth of a gram. If a cook spills even a grain of rice or drop of milk, the precision is lost and the food must be thrown out. If a patient doesn’t eat all of what he or she is served, including the prescribed amounts of salt, pepper, butter, and coffee creamer, the remains are weighed and the measurement is subtracted from the daily intake. Although no studies requiring such strict regulation have yet been done in Dallas, some GCRC research demands that subjects actually lick their plates after meals to be certain they ingest the correct amount. And some volunteers must collect their bath water so that it may be analyzed for the presence of certain trace elements that may be passed through the skin.

Marvin Yudenfreund began working with Dr. Philip Raskin as a volunteer in 1981. A chemist with a Ph.D., Yudenfreund, now age forty-three, had suffered from insulin-dependent diabetes for twelve years. His first study involved a one-and-a-half-year insulin trial. Participation was on an outpatient basis, and aside from submitting frequent blood samples, Yudenfreund says his lifestyle was not altered.

Other studies have required him to eat only GCRC meals-a particular challenge for the dietitians since Yudenfreund eats kosher foods. He laughs about taking hospital fare with him when he and his friends went out to restaurants. Usually, he says, the waiters would cheerfully warm his meals for him in the restaurant’s microwave.

Yudenfreund was an inpatient at the GCRC for three twenty-one-day studies in late 1984 and mid-1985. During those studies he was not required to spend every night at the GCRC-he says he got “day passes,” but he was monitored once a day and ate and drank only food and water prepared in the GCRC kitchen. His maximum in-house stay was eight days.

“While there you submit your body to the slings and arrows of outrageous fortune,” Yudenfreund says, grinning. “Some of the tests are uncomfortable; others don’t require any discomfort at all.” He says he spent his inpatient days catching up on his work as research manager of special projects for Mohawk Laboratories.

Currently he goes in once a year for a long-range study on the long-term effects of insulin pump use and tight blood sugar control. Doctors hope he’ll help prove that patients using the pump have fewer diabetes-related complications.

“Intellectually, it’s very exciting to be able to help others make a contribution to science,” he says. “I enjoy the opportunity to talk with the research staff and find out more about my physical condition and what they are learning.”

Loren Mart, a thirty-nine-year-old disabled professional photographer, was one of those involved in proving Brown and Goldstein’s theory about LDL cell receptors and cholesterol. Mart, who has a genetic heart disease, suffered his first heart attack in 1976 at age twenty-nine. By 1978 he’d had three at-tacks and his major arteries were almost completely clogged. In 1979, five blocked areas in his coronary arteries were surgically bypassed, and in 1982, he was asked to participate in the first research to be done on mevinolin, one of a new class of drugs used to increase synthesis of LDL receptors. (LDL receptors are Upoproteins that bond to cholesterol molecules and pull them out of the bloodstream into the cell.)

Today Mart continues to take mevinolin; he hasn’t had another heart attack. His cholesterol level remains in the high normal range. Recently, with Mart’s permission, doctors discontinued the drug for three months to see if it helps in the removal process of cholesterol from the bloodstream. “That makes me a little apprehensive,” he says, “but I know it won’t do any long-term harm. If there were any danger at all, I know they wouldn’t do it.

“I’m lucky to be here,” Mart says. “Without benefit of mevinolin and the people here, I could very well be dead by now. I weighed the alternatives. I had spent five years in pain, waking up in the middle of the night unable to breathe. After that and three heart attacks, taking a pill that may cause cancer fifty years down the line doesn’t bother me. I’m here; I’m available. I have an eight-year-old daughter and we don’t know yet if she has this condition, but if she does, maybe somewhere down the line this will help her or maybe it will help someone else.”

SANDRA MCKEN-drick, a research technician who recently graduated from college and is considering medical school, was attracted to a study supervised by Dr. Pak on how diet affects kidney stone formation primarily because it offered what seemed like easy money-$500 for following a prescribed diet for thirty-six days. She and her boyfriend, law student Drew Fossum, signed up together.

The two got their first clues as to just how elaborate the study would be during their first meeting with the doctors involved in the research, when they were told about the procedures involved in the research: maintaining a highly regulated diet, collecting all urine and stools, and having blood drawn frequently. The doctors explained what possible effects participation in the research could have on their lives and the various and unlikely dangers involved, such as an infection resulting from blood being drawn.

The center dietitian, after calculating their average daily caloric intake, outlined a diet that would keep their weight constant through the experiment. McKendrick and Fossum participated in three twelve-day diet phases, one with a high amount of animal and vegetable protein with eggs, one strictly vegetarian, and one vegetables with eggs. All phases were to be low in sodium. Dairy products were also severely limited. During each phase they cooked at home the first six days and ate “take-out” from the GCRC kitchen the rest of the time.

McKendrick says it was harder for her to follow the diet than it was for Fossum. “He loved having all decisions made about what to eat, but I hated it. I found that I didn’t feel quite myself; you’re really controlled by it. The coffee is all decaffeinated; no aspirin or i decongestant is allowed. After collecting all my urine and stools-that was the worst part-I felt as though I had a ball and chain on my leg.”

But she says she didn’t really consider cheating. “I ate everything I was supposed to. You go into it with the thought that they are giving you $500 and if you’re going to cheat, why do it? Otherwise we could have wasted a lot of people’s time.” McKendrick said the day she finished the last meal of the experiment she had all her favorite foods lined up-pizza, ice cream, cheese. “I absolutely went berserk over Christmas.”

By mid-January, though, McKendrick was halfway through another study, this one involving a metabolic diet to determine the effects of citric acids on estrogen, part of Pak’s osteoporosis study.

She was counting the days until the experiment was to be concluded and swearing she’d never agree to another study, after a morning bus ride to work during which she’d glanced down and noticed liquid streaming from her duffel bag toward the front of the bus. She thought her container of collected urine had broken, but it turned out to be only the special drinking water she had to carry with her to work. Nevertheless, McKendrick says she’s through with being a guinea pig-a terra that makes staff members cringe but that most volunteers use good-naturedly to refer to themselves. “I thought I could do it, but no more-I’ll get a part-time job next time I need more money.”

A Parkland lab technician who asked that her name not be used is another participant in the study on osteoporosis. Although she is in her twenties, the chemotherapy she underwent for breast cancer caused her to experience early menopause and the beginnings of osteoporosis. She’s been through a painful bone biopsy and submitted many blood and urine samples to the GCRC, but she says she’s delighted to be a part of the research.

“In monitoring my condition, they are doing something for me I couldn’t get anywhere else. If you have a chronic illness-like osteoporosis-you can wait around for years for a cure or you can get ahead by years by putting yourself in the hands of the best doctors, the ones who’ll know about a cure as soon as it’s available.”