Data, institutions, and troublemakers

Two very interesting things happened in close temporal proximity to each other this week. They are related, and they really opened my eyes to the kind of world that is public health. They also taught me a lot about institutional memory. Actually, three things happened this week, but the third has its roots in the 1940s.

The first thing happened during a discussion of a research project. The principal investigator of an ongoing study asked a student to make good use of “the investigator’s data.” Mind you, it wasn’t the data of the school. It wasn’t the data of the people who provided it during the study. No, it was the investigator’s data, and, dammit, you were going to use it to his liking or not use it at all. I almost jumped out of my chair. (It would be the second time in one day where I almost bit off my tongue to keep myself from saying something very unprofessional.)

The second thing happened during a presentation. A friend and colleague told me that we must always thank the people who participate as subjects in the epidemiological studies from where we draw our data. (He warned me that he would take me to task if I didn’t when I present my thesis.) Both of these things showed the dichotomy of how public health professionals see the people who participate in research studies. On the one hand, you had the PhD scientist who sees the people — or at least the data derived from those people — as his property. Or, at the very least, as an abstract “thing” that is his to control.

On the other hand, you have a PhD student who sees the people as the targets of his studies. He is not in it for himself but for the benefit of the people in those studies, people who see our school many times as an “Ivory Tower” of sorts. Many people who participate in these studies have zero opportunity (by chance or by design) to attend our school. That lack of opportunity may very well extend for generations up and down because of the social and economic situation that surrounds them.

Take, for example, a person with HIV. They face costly medical bills for their antiretroviral therapy and, should they progress to AIDS, the medical care that will come in the future. They also face the stigma of being infected, depending on their family and community dynamics. Chances are, if they are HIV infected in Baltimore, they are poor, disadvantaged, and everything else that comes with that.

The third thing that happened this weeks was a lawsuit against the school for one billion dollars. In the 1940’s, the US Public Health Service conducted a study on unknowing (maybe unwilling) subjects in Guatemala. The subjects were deliberately exposed to infections that are otherwise sexually transmitted. Then they were observed in order to learn about the natural progression of the disease.

This is different — though just as appalling — as the Tuskegee syphilis experiment. In Tuskegee, medical treatment was withheld from patients with syphilis in order to study the disease. In Guatemala, people were deliberately exposed to syphilis (and other diseases) then given antibiotics (some of the time) to study the progression of the disease and the effectiveness of antibiotics. In both studies, the human rights of the subjects were violated in ways that would topple governments were it to happen today. At least that is what I hope would happen.

Today, we have bodies like institutional review boards to approve and oversee epidemiological studies and make sure that basic principles of human subject experimentation are followed. According to the report on what happened in Guatemala, four doctors associated with Johns Hopkins were on the board that oversaw the activities of the study. It would be unfair to say that the researchers, professors, and others at the school are responsible for what happened in Guatemala, but the way that the researcher referred to “his data,” as some object to be possessed and not as something that was derived from living, breathing human beings, made me sad that such bright people — leaders in their field — can become so blind to the meaning of their work.

As I discussed this with my wife, I came to the realization of why the world needs troublemakers. I don’t mean troublemakers who do things for a sociopathic reason and end up hurting other people. I mean troublemakers who don’t like the status quo and want to make the world better, rules be damned. (My wife was quick to point out that she is the kind of troublemaker who works within the rules, while I tend to grab the rules and stare at them like they’re something foreign to me.)

One of my mentors once told me that the number one job of institutions and organizations is to maintain the status quo. Big, decades-old universities are among these institutions. While they give us great opportunities to advance our careers and help people the world over while we’re doing it, we are part of them, and must grow and help them grow. Institutional memory should remember what was done well, done right, and also remember what was done wrong in order not to do it again.

At least I hope that’s how institutional memory works. I hope it’s pliable like that.

I'm a doctoral candidate in the Doctor of Public Health program at the Johns Hopkins University Bloomberg School of Public Health. All opinions posted here are my own, of course, and they do not necessarily reflect the opinions of my school, employers, friends, family, etc. Feel free to follow me on Twitter: @EpiRen

One thought on “Data, institutions, and troublemakers

  1. I’m reminded of the many times I’ve cautioned someone over viewing events and socially accepted practices of the ancient past with the mores of 21 century minds.
    I’m reminded that because, we do indeed tend to do that, even with the relatively recent past.
    We’ve moved forward from what was done during the 1940’s *because* of horrors that occurred during WWII and our reflection of how we did similar things to people outside of and within our own nation and that the only true difference is, we didn’t have big ovens for the test subjects.
    So, we look at such experiments with the same level of disgust as we looked upon the Nazi concentration camps (a name we actually used for the Japanese-American concentration camps, but renamed them once Germany’s concentration camps were discovered). As a direct result of that disgust, we’ve developed institutional review boards, ethics panels and protective laws, as well as a code of behavior.

    It’s just a shame that it took such events to drive us forward, rather than naturally moving forward. But, institutional memory is also institutional inertia and change is hard won and frequently resisted.
    As recent events in Indiana clearly shows.

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