The Question of Who “Chooses” To Participate In Clinical Trials
Is the current economy making more people want to participate in human research studies, asks Isis?
In this new study here at MRU, we began advertising online last Wednesday. By Friday, my study coordinator had received 300 responses…I can’t help but wonder if the current poor economy is driving more people to consider human research.
Probably – I wouldn’t be at all surprised. It seems possible to me, though, that is just an exacerbation of the situation that obtained previously – which is that poorer people have always been attracted to participation in clinical research trials either as a means of making money, or as a means of obtaining at least some sort of health care, even though clinical studies are most definitely not about providing health care to the participants. That may be the other motivator for Isis’s applicants. Many people don’t really understand that clinical trials are not really places to receive health care.
When I worked in the pharmaceutical industry, a few of my coworkers seemed to have fuzzy ethics around this point, too. At least one of my coworkers was explicit in his belief that it was an ancillary “benefit” for clinical trial participants to obtain the attentions of medical professionals during a clinical trial. He insisted on referring to participants as “patients” rather than “subjects” (which I think is the preferred and correct term).
If you are wealthy, or even reasonable well-off, you have access to the best already-tested and approved health care and treatments on offer. Or you can figure out how to work the system and get yourself into Phase III clinical trials if your medical situation is such that there are no good tested options available out there. What you most likely aren’t doing is saying to yourself, “Hey! I could make fifty bucks if I sign up for this Phase I clinical trial, AND I’ll be helping out science, AND maybe I’ll finally get my blood pressure checked by a real doctor, too!”
I appreciate Dr. Isis’s sense of unease over the recent recruitment phenomenon. But I think it is just foregrounding an issue that has been there all along.
Thought experiment: Sometimes I have imagined a society where everyone is eligible for, and required to, participate in clinical research, akin to jury duty, or maybe like military service in Israel. Only when you were called up, you’d be assigned to a research study that was a good “match” – if you are healthy, you go into a Phase I or II; if you have a medical problem, you go into some relevant Phase III. Spread the risks and responsibilities out across the society regardless of social glass, gender, race. Of course its unworkable, but what would be the pros and cons of such a system? What things would need to change radically to make it work? Would drug development research need to move largely out of the hands of private industry or could it stay pretty much as it is?
Note I am not advocating for such a system, just floating it as a thought experiment to examine how we do things now and how we might do them differently. I have participated in clinical trials – as a student, just to get the money; as a researcher, with the goal of bringing a new therapy for a disease to market; and as a patient, in the hopes of helping doctors come to a better understanding of my particular illness. I’ve helped someone else gain entry to a clinical research study because no other available therapies were helping this person and we hoped the study therapy (it was open label) would work (it did provide partial relief that has persisted over time). So I’ve seen them from a variety of perspectives. The best-planned study in the world can be left with misleading results if participants are overly motivated by money, or by the hope of obtaining medical treatment for illness.