For some reason, there is a newfound fascination with clinical trials among TV producers. Of course they've sensationalized clinical trials by playing to the lowest common denominator, and disparaging all clinical trial participants as "guinea pigs" and "test monkeys." Terms we absolutely reject at the Association of Clinical Research Organizations (ACRO).
What some have left out of their narrative about clinical trials is that they're highly regulated, well-controlled, professionally managed scientific investigations that are absolutely essential to developing new lifesaving drugs and therapies for patients. But you wouldn't know it from watching your TV.
People who participate in clinical trials deserve more respect because without these medical heroes, there would be no new medicines. Patients who enroll into a clinical trial do so with the careful coordination of their doctor, with an understanding of the potential risks and benefits, and with the knowledge that they may not be helped, but that future patients will.
Clinical trials are not only essential to our future good health but also an important economic driver, helping to create jobs at clinics, community hospitals, and academic medical centers.
Journalists who report medical news have it right; frequently we see the importance of clinical trials when the news media celebrates the latest medical breakthrough. Just recently, the FDA approved a drug to be used in treating multiple myeloma -- a cancer of the plasma cells. It's also approved new drugs for conditions such as chronic obstructive pulmonary disease (COPD) and weight problems, and has also approved an orphan drug to treat Gaucher disease, a genetic disorder where fatty acids build in the cells and other organs and that affects about 6,000 people in the United States. None of these medical breakthroughs would have been possible without clinical trials.
But unfortunately, there have been three troubling examples downplaying the significance of medical research and outright disrespecting the volunteers who participate in clinical trials for the greater good of our health system. One is a fluke; two is a coincidence; three is a trend.
Toshiba USA recently launched an ad campaign for their new Satellite Ultrabook laptops featuring a so-called "professional medical tester" posing as a "guinea pig" and "test monkey." This ad campaign is extremely insulting and offensive. But it's also highly ironic, since Toshiba has a division that manufactures imaging and diagnostic devices that must undergo clinical trials in order to be brought to market. And at the time of their ad campaign, we found that Toshiba was conducting clinical trials on infants to determine the efficacy of new MRI machines. Surely Toshiba wouldn't really refer to infants as "test monkeys." Would they?
We have made our objections known to Toshiba but so far the company has provided a wholly inadequate and perfunctory response. And the ads are still running.
More recently, a reality television producer, Robert Mazza, with ties to Apprentice and Survivor Executive Producer Mark Burnett, announced via his Twitter account that he was seeking contestants for a new reality television program. According to an advertisement, contestants will be paid "BIG MONEY" to participate in clinical trials and other experiments. Like Toshiba, this too is appalling, extremely risky and beyond the ethics of medical research. ACRO has requested that the Food and Drug Administration (FDA) investigate this proposed show for possible violations of human subject protections and other FDA regulations.
Hollywood has another chance to get it right and hopefully the third time is a charm. It has been reported that CBS has agreed to a pilot program for a medical drama about a group of doctors running clinical trials in a hospital setting in Philadelphia. While the working title of the show - "Guinea Pigs" - is highly offensive, CBS's reputation for producing high-quality dramas may result in a balanced, thoughtful look at clinical trials, the people who participate in them, and the medical professionals who oversee them.
We are not without a sense of humor but the hope of clinical trials is reality - not reality TV - for the millions of people who suffer from life-threatening and chronic diseases. Corporations, including network television executives, have a social responsibility to get their facts straight regarding clinical trials.
Right now, the country is facing an outbreak of West Nile virus, for which there is no vaccine. Without clinical trials, and the volunteers who participate in them, no vaccine can be developed.
Less than four percent of the American population participates in a clinical trial and that number is far too low if we're to make great medical strides this century like finding a cure to Alzheimer's or AIDS or cancer. But most importantly, people need to understand the risk and rewards of participating in clinical trials and enter them with the knowledge that even if they do not benefit they are making a contribution to science that may impact patients around the world.
Patients who participate in clinical trials should be applauded for their willingness to contribute to medical science. They don't need to be exploited, made fun of or otherwise degraded. Often times, patients involved in a clinical trial end up there because they have exhausted other available options and need access to new, experimental treatments.
Unfortunately, those in a position to do so much good choose to instead take lightly the process that could help solve some of the greatest global public health challenges. The American public needs to know that without clinical trials, there would be no new treatments for people suffering from disease.
Doug Peddicord, Ph.D., is Executive Director of the Association of Clinical Research Organizations, Washington, DC.