For a substantial number of participants, studies show, volunteering reflects an array of motives including altruism, personal or social satisfaction, and the lure of working with admired scientists. Relief of boredom counts, too, notably among retirees.
"Volunteering broadens your scope of interests," says Malone, the volunteer from Baltimore. Peer, the 70-year-old Michiganer, says, "my primary reason is to help people, and when I retired, I had a lot of time on my hands."
"Don't fall into the trap of making simple generalizations about why people join studies," warns Kass, whose own research supports a wide mix of motives. "In our studies, one reason absolutely was money, but for a very large number, repeat volunteering is driven by intellectual curiosity and socializing," and no amount of money would work if they felt they weren't of value. "They liked being in the halo of the medical profession," she adds.
A third of the 60 volunteers Kass studied had college degrees, half were employed full-time, and nearly one in three had been in more than 10 studies. Notably, those without college degrees were almost 19 times as likely as grads to have participated in 10-plus studies. In response to direct questions about what was best about the experience, four themes emerged among all volunteers: making contributions to science, making money, meeting people (staff and other volunteers), and relaxation.
When prompted to discuss the money, 55 percent said it was a "good" aspect, 46 percent the "best" aspect. Paradoxically, perhaps, college grads were more than three times as likely as the less educated to cite money as a big motivator, as were whites over nonwhites. Nearly one quarter of the volunteers said it was an easy way to live, enjoy free meals, or make money. "Like a vacation," one put it, suggesting that for some, spending time outside their quotidian environments is an attraction. Nearly one quarter liked learning about their health, science, or medicine, and they appreciated preventive care such as cholesterol screening. Asked to name "the bad things," only 5 percent said the study did not pay enough, while 37 percent mentioned pain, scarring, diarrhea from bacterial challenge studies, and multiple blood draws.
That non-whites and those without a college degree are less likely to be motivated by money suggests yet another, subtle influence—the desire for social power. Some people are easily wooed by those they perceive as socially desirable, and volunteers' behavior certainly raises the likelihood that they hold the scientific and medical professions in high esteem. They may be motivated by the desire to be part of a group or activity they believe is highly valued by those they admire. The higher people score on a test of approval-seeking, the more likely they are to volunteer for studies. Particularly among repeat volunteers, it's likely they enjoy being part of a team, in an intellectual atmosphere, and fear losing the approval of researchers and team members if they don't return for a next round of studies.
Not Such an Odd Decision
For bioethicists, the major concern is whether participants have been coerced, financially or otherwise, to risk their health and occasionally their lives. Yet Ruth Faden, director of the Berman Institute for Bioethics at Johns Hopkins, asks why society should consider the risks NHRVs sign up for any less rational than the willingness of people throughout history to take on other "dirty work" or dangerous assignments; they see it as a way to better themselves or society. "It's paternalistic for people who don't mine coal or become police officers or soldiers or rescue workers to automatically consider those who do as vulnerable, irrational, or exploited," Faden points out.
Indeed, she notes, it's as likely as not that veteran volunteers are just fine and the issue with their motivation lies not with them but us. She recalls driving to the train station one day behind a trash truck when a large garbage load fell to the road and the men on board swooped down to pick it up. "I thought to myself, 'I'd hate to do that and I'm glad I don't have to.'" But then it occurred to her that she didn't necessarily have the right or the right perspective to question the motives of those who perform such jobs. "Maybe," she suggests, "whatever collective squeamishness we have about creepy or risky work results less from any real problem among those who do it than from the fact that we all benefit from what they do—but fail to appreciate them or pay them a fraction of what they are worth." —Joann Ellison Rodgers
Know Your Rights
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Protect yourself.
Check out websites devoted to research volunteer protection and education, including the Alliance for Human Research Protection (ahrp.org) and the federal Office for Human Research Protections (hhs.gov/ohrp), as well as the Center for Information and Study on Clinical Research Participation (ciscrp.org). Look especially at the latter group's Clinical Trial Volunteer's Bill of Rights.
Make sure that studies are approved by an institutional review board.
Google the investigator and the funding source, remaining alert for controversy.
Have someone else read the informed consent forms along with you, preferably someone with only your interests at heart and not a fellow guinea pig.
"Consider best and worst case scenarios, and put yourself in those scenarios,"says Ohio State's Suzanne Bartholomae. Ask about all potential side effects, not just the major physiological and psychological risks.
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