Kenneth A. Getz
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National and international public opinion polls document that public confidence and trust in the clinical research enterprise
has eroded steadily during the past decade. But despite widely publicized controversies that have damaged the public's trust
and confidence in the credibility of stakeholders in the clinical research enterprise, their desire for better health and
well-being has not diminished. The public has demonstrated remarkable tolerance for mistakes. As such, there is a unique but
closing window of opportunity for the clinical research community to build on this foundation to restore public confidence
and trust.
Belief in the need
A number of polls indicate consistently that general public support for medical and health research remains strong and has
not changed significantly during the past decade. Two HarrisInteractive polls, conducted between two and five years ago among
more than 1000 American adults, found that eight out of 10 people believe it is "very important" to "essential" that all new
drugs and treatments are tested on human beings in clinical trials before they are approved for general use.
A 2004 poll conducted among 1000 Americans by Research!America, a lobbying group representing academic institutions and foundations,
found that 94% believe that medical research is important for the economy and 68% perceive clinical research as having great
value for public health. Polls conducted in Western Europe show similar levels of positive attitudes about clinical research
among the public. In a 2004 survey among 225 Europeans, 90% considered clinical trials important and 60% acknowledged that
clinical research plays an important role in advancing public health. This survey and those sponsored by Research!America
were conducted largely among adults who have never participated in clinical trials. Research community distrust
Although the public clearly holds positive attitudes about the general importance of clinical research, they distrust professionals
who oversee, manage, and support that research. The public also distrusts organizations responsible for ensuring patient safety
and the patients who are willing to associate with clinical research professionals. Consider the following:
- In national polls conducted in 2006 among 1000 U.S. adults, only 14% of respondents said that they consider clinical trials
"very safe," and 48% consider clinical trials "somewhat safe" (CISCRP).
- A 2007 poll found that 27% of U.S. adults don't trust the Food and Drug Administration and only 31% believe that the FDA is
effective at ensuring safety (HarrisInteractive).
- Nearly half of Americans (46%) say they don't trust Capital Hill officials who govern regulatory oversight and drug development
processes (HarrisInteractive).
- Four out of 10 Americans (42%) don't trust pharmaceutical and biotechnology companies and feel that they have failed to serve
consumer interests (HarrisInteractive).
- A January 2008 survey found that nearly half of American adults (45%) don't trust research sponsors to inform the public quickly
when safety concerns about a drug are uncovered (Kaiser Family Foundation).
- Half of white respondents (49%) and 73% of minority respondents reported that it is "very likely" or "somewhat likely" that
they might be used as guinea pigs without their consent. And more than one out of four minority respondents (25%) and 22%
of white respondents believe that their doctors would expose them to unnecessary risk in clinical trials (Braunstein et al.,
Medicine, 87 (1) 2008).
- One out of four American adults believes that doctors and study staff are primarily motivated to recruit volunteers for money
and selfish interests (HarrisInteractive, 2002).
Public distrust in clinical research professionals has tainted the public's view of clinical research volunteers. National
and international polls both show that a large percentage of the public considers research subjects to be risk takers, motivated
to find clinical trials because they are either greedy or desperately ill.
