Over the years Kartini Clinic has been an enthusiastic proponent of research in our field, contributing to and even initiating research projects whenever we could. But recently I have had an up-close and personal example of why “caveat emptor”(let the buyer beware) applies even in this exalted field.
Partly it has to do with motivation and partly with arrogance and paternalism.
Why would we add research to our busy clinical schedule? Not because we need to publish or perish, certainly, because we don’t. Not because we are paid for it, because we aren’t and never have been. Not to become famous…. I hear laughter….
No, we love research because we want to know why, we want to know how. Why does anorexia nervosa of childhood present as it does, and why does it present when it does? How can we better define it, analyze it and—above all—treat it?
All research is preceded by something called “informed consent”. Consent is obtained from a family by a Kartini Clinic practitioner, and guess what that means? It means that our families trust us to do no harm, to be motivated by something other than self aggrandizement or money, and to truly, truly be interested in understanding their child’s illness. Many families are thrilled to be a part of finding out answers to clinical conundrums, but they are not interested in being a cog in someone’s career wheel. All interventions carry some minor risk, even if it is only an increased perception on the part of the patient that they are not normal. It costs time. It may cost blood.
So recently, after some harsh words with a few colleagues, we had to decline to participate with them in research that would have involved a heavy “donation” of time from our patients without allowing families or us to know any results even though these were easily available to graduate students assisting in the research.
Sometimes, when a donation of genetic information from a quick spit in a tube is required we (as participants) may never know individual results. This can be acceptable. The “donation” is small, the potential yield is large. And wherever we (Kartini Clinic providers) have information about an individual child and their parent(s) asks us for it, we give it, even though that may mean time-consuming, sensitive conversations. And the research recently proposed, although it would have involved a donation of several hours’ time, would have been acceptable to us but for the fact that it was made clear that we would be given no results as “we were not trained to properly interpret them” (or presumably even think about them) and might “inappropriately make clinical decisions” based on them or?horrors—share results with parents, who certainly were “not trained to place any results in the proper context.” Further discussion with these researchers revealed a fundamental difference in motivation: they were not motivated primarily by a desire to help to treat or to understand children with eating disorders; in fact, their only contact with such diagnoses was “in their training” which they characterized as “extensive” (excuse me, did you say expensive?). They did not feel parents should be involved in any way, except as “donors” and that this should be done “for the sake of science”. I submit to you what was really meant was “for the sake of being authors on a paper,” which is what “science” boils down to for some researchers.
Again caveat emptor. Our families trust us, whether for treatment or for research. And you know what? They can.
