When research goes wrong

We like to think of academic research in a rosy light. It helps society progress. It saves lives. It builds amazing gadgets and gizmos. It flies us to space.

And for the most part, this is true. But there are times when it goes terribly wrong. History is littered with such examples, such as the Tuskegee Syphilis Study, when a sample of poor African American men weren’t treated for syphilis (even when penicillin was available later in the study) so the doctors could ‘study’ what happened to them as the disease progressed. I will spare you other examples. If you’re curious, Google “unethical human experimentation” and the results will speak for themselves.

Today, many of us like to think of these cases as being relegated to the past and that we, with the gifts of modernity and enlightenment, don’t need to worry about it. We’re ‘safe,’ so to speak. But are we?

The reason I write about this today is because of a case that occurred close to home.

In the summer of 2017, Purdue ordered that a research study called Camp DASH be shut down not quite two weeks into its second scheduled 25-day session. Camp DASH was part of a five-year federally funded research study investigating the effects of diet and sodium reduction on blood pressure in adolescents. Study participants were youth, ages 11 to 15, who were at risk for hypertension. They lived on campus for the study.

The camp was closed because it was deemed unsafe for the children participants, and cases (and in some instances multiple cases) of the following were reported: violent assaults, sexual harassment, inappropriate touching, bullying, fighting and intimidation.

The design of the camp was found to be at fault, with inadequacies in the following areas: supervision of participants, supervision of camp counselors, staffing, screening of participants, programming for participants, budget and living accommodations. Although there were rules and policies in place that could have prevented much of this, there was what was labelled by IRB* reviewers as a “culture of noncompliance” fostered in the team, in which there were: multiple failures to comply with university policies and procedures, failure to complete required background checks, failure to complete CITI training, failure to comply with University Residences rules, failure to report suspected child abuse and sexual exploitation of a minor in a timely fashion, no registered nurse on staff, lack of candor to university administrations, etc. etc.

The details can be found here.

I’m not going to go into any more details because my point isn’t to feed our desire for the grotesque. However, I do want to us to think about it.

How did a group of students, likely disadvantaged socio-economically (these tend to be the students who participate in these types of paid studies), get placed into a position where the negligence caused them both physical and mental trauma?

We can conjecture. A researcher won a prestigious grant and probably felt the pressure to deliver and, whether by hubris or inattention, skirted over the fact that they were not prepared to execute this camp and experiment in a safe way for the subjects.

And while we don’t like to think about unpleasant things, we must. And we all must be vigilant. We cannot skirt over the details and certain irritating and time-consuming bureaucratic policies and protocols. These policies, protocols and IRB reporting exist for an extremely good reason. They exist because we need to protect the people we study and we need to protect ourselves from our own ignorance on how we may unwittingly cause harm.

 

*For those who work in academia, you’re familiar with the IRB (Institutional Review Board). For those who aren’t, the IRB is responsible for reviewing and subsequently approving or rejecting all research conducted on human subjects.

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