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There's virtue in volunteering
31 March 2008
by Billy Baker

A little over a year ago, a survey asked 900 people which of the following makes the greater contribution to mankind: A person who gives blood; a person who volunteers to take part in a clinical trial; a person who raises money for a charity by running in a race; or a person who donates an organ.

The survey was conducted by the Center for Information & Study on Clinical Research Participation, a nonprofit founded by Ken Getz, and the results helped illustrate why Getz created the center: Clinical trials finished dead last.

A senior research fellow at the Tufts Center for the Study of Drug Development, Getz believes that the public just doesn't understand clinical trials and, because of that, they can't gauge their vital importance.

"When does a person care about clinical trials? It's not when they're healthy and riding in the subway," he said, referring to the ubiquitous ads that fill MBTA trains and seem aimed at cash-strapped, Top Ramen-eating college kids willing to sleep in a lab for a couple of bucks (Getz himself volunteered to get seasick for a Dramamine study while he was a Brandeis undergrad).

"Most people are reactive to their own health conditions, and when they go through a clinical trial, it's because they're thinking about helping themselves."

But, Getz said, when people do go through the process, something happens to many of them. They realize that while the treatment under study may take a while to develop and might not help them, it can help others. And that's when, he said, an unanticipated feeling of altruism will wash over them.

Translating this feeling to the general public is, Getz admits, a tall order. The quest is hampered by a negative public image of drug companies, he said, especially movies, like "The Constant Gardener" that regularly portray the drug companies as the evil bad guys and the clinical participants as the unsuspecting victims.

Yet, with 80 percent of clinical trials delayed at least a month because of unfulfilled enrollment, this image problem is devolving into something of a medical crisis.

"Without participation in clinical research, there are no advances in medicine. It's that simple," said Dr. William F. Crowley, Jr., the director of clinical research at Massachusetts General Hospital and a professor at Harvard Medical School.

"The task is mammoth. But at least [Getz is] starting," said Crowley, a supporter of Getz' who joined the research participation center as a board member. "You can only curse the darkness for so long, and he's lit the candle here."

Getz, who is 45, first discovered that darkness while working on the business side of the drug industry, as a consultant to drug and biotech companies. Yet as he got to know the patient community, he found they were under-informed and intimidated by the process, and those who did want to participate didn't know where to begin. He launched a publishing company to collect market data on clinical research, and it was here that he inadvertently backed in to his roll as town crier for the clinical trial world.

"Patients started calling, really motivated patients who were looking for hope," he said, but they didn't know where to look.

In 1995, he launched a website listing clinical trials that were underway, and traffic was heavy. And he wrote a book, "Informed Consent: A Guide to the Risks and Benefits of Volunteering for Clinical Trials," that explained the realities of the system, and the questions patients should be asking, with the goal of empowering them in the process. With the clinical research participation center, which he created in 2004, he took that movement a step further, creating a clearinghouse aimed at educating the public about clinical trials.

While he maintains that education is his chief goal, the title of his latest book makes clear that changing the public's perception of clinical trials is key. It's titled "The Gift of Participation," and he refers to trial participants as "medical heroes."

"Participating in a clinical trial can be profound," he said. "But I don't think the public understands the magnitude, the impact that volunteering can have, its essential role in every medicine that sits in our medicine cabinets.

"If they did, they'd put it on par with organ donation," he said, referring to the survey where organ donors finished on top. "My mission is to move us out of last place."