The weekend before last, I watched the 60 Minutes story on a medical research scandal at Duke that began in 2010.
The focus of this sad account was a medical research physician whose ambition got the better of him, and a research institution whose faculty is perhaps too trusting of—and too vested in—seemingly major scientific advances.
But beyond the legal and academic issues of this case, my thoughts kept coming back to the patient volunteers enrolled in what was ultimately shown to be a futile trial (these were patients with various advanced cancers).
As a clinical investigator myself, I have always been in awe of the research patients and healthy volunteers with whom I’ve worked over the past 30 years.
Sure, clinical research volunteers are reimbursed for their time and effort and patient volunteers with a medical condition stand to potentially benefit from a treatment or prevention trial.
But beyond these motivators, I’m convinced that these people possess a special quality that makes them willing to turn over a portion of themselves to a medical researcher. I don’t know whether this ability stems from a so-called ‘altruism gene’ that has been proposed to exist in various species; I do know that this behavior seems to be very close to what ultimately defines ‘human-ness,” perhaps more so than other emotions or skills we share with other animals.
In fact, I might use an overworked term and call these research participants ‘heroes,’ since a certain quality of courage surely must be there along with altruism.
Clearly, we would not make any medical advances without research participants being enrolled in “first-in-human” studies or in clinical trials. It’s said that only 7% of eligible American adults participate in clinical trials, which is one way of explaining why so many studies are conducted overseas. While lots of factors play into this, cases of research fraud add to the negative perceptions of research participation. This not only thwarts scientific progress, but actually may hinder the access of patients to improved care.
If we want to change this dynamic, at least one approach is to credit the heroes who are usually forgotten, and celebrate their selfless contribution to advancing medical research.
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Maybe participants should get a cut of the drug companies’ profits? I’m sure that would get higher participation rates =)
Great piece! It’s great to hear a mellifluous tune for these unsung heroes. As you note, volunteers are special people (in the good sense of “special”). Indeed, the epidemiologist David Sackett has called volunteers “a strange and healthy lot,” which underscores some of the challenge of generalizing research findings, but also their altruism. And to the extent that Michael’s comment wasn’t entirely tongue in cheek — I would note that excessive compensation for research participants raises a red flag for ethicists (and IRBs), concerned about potential coercion. Participants must give consent that is fully informed and fully voluntary.