- BIOETHICS FORUM ESSAY
How Can Research with Prisoners Be Done Ethically? Q&A with Charles Lidz
Clinical research with prisoners is ethically vital and challenging. Studies investigating novel psychological, behavioral, and pharmacological interventions are imperative for the health and experiences of the people they focus on. Yet clinical research on prisoners also raises considerable ethical concerns—most notably, whether prisoners participating in research are subjected to coercion or exploitation.
An article in the March-April issue of the Hastings Center Report, detailed a qualitative study of prisoners’ reasons for participating in clinical research in jails and prisons in one U.S. state. The authors sought to examine prisoners’ own considerations and motivations when deciding to participate in research, conducting interviews with adult male and female prisoners who were current or past participants in other research initiatives within the correctional system. Interviews illuminated internal and external factors that both encouraged people to participate in research and cautioned them against doing so.
While U. S. regulations require that research with prisoners pose minimal risk or provide benefit to prison populations, many scholars have still questioned whether research protocols properly protect against coercion and exploitation. Principal concerns surrounding these issues are whether people are driven to participate because they believe that they will receive compensation or a medical treatment or intervention that they need and cannot receive otherwise, whether the research has sufficient benefits for the population it is studying, and whether a vulnerable population is inappropriately exposed to risks. Although the study’s findings suggest that prisoners did not perceive their experiences as coercive, the authors have concerns that people are sometimes inappropriately dissuaded from participation.
I spoke with one of the paper’s authors, Charles Lidz, a professor emeritus of psychiatry at the University of Massachusetts Medical School, about the study process, his interpretation of “coercion” and informed consent, and his conclusions from and next steps for the work. This interview has been condensed and edited for clarity.
RZ: What do you consider to be the most important ideas and arguments in your article?
CL: It portrays the diversity of issues and concerns that prisoners have. They are not different from the rest of us. We have this model where people weigh risks and benefits against their values, and then they’ll make a decision on the basis of that. Nobody makes decisions like that. I think that’s very apparent from this study. Prisoners studied cited a number of reasons to participate. Sometimes people saw advantages that other people would see as disadvantages, or vice versa. Decisions are personal, and I thought that came across really well.
Did you find that some of your participants’ experiences were all negative or all positive, or did people have mixed views of why they wanted to participate in research?
It is a biased sample because we only got people who consented. We didn’t get the people who would feel like research was an awful thing or don’t want to do it for some reason. The negatives that we got were in the context of deciding that it was a good idea to participate. There were some people who were explicitly positive about it and thought it was wonderful to have the opportunity—sometimes it struck me as a little naively so.
The tricky problem here comes out in Reiter’s commentary on coercion. [RZ: Keramet Reiter’s Another Voice essay in the Hastings Center Report responds to conclusions of Lidz and colleagues, arguing that given the extreme living conditions and lack of treatment alternatives in prisons, research offering treatment or meeting basic needs could present issues of coercion.] The classic definition of “coercion” (and I think the right one), is given where you are, could research being conducted threaten to make your situation worse if you don’t participate? That is clearly not what we’re dealing with here. That is the classic definition; that’s not the only consideration. The point that Reiter is making is that these people are being treated badly.
Almost all the research participants I work with have lives that are pretty bad. Does that mean I shouldn’t do research with them? I think prisoners are treated very badly, and I don’t think it’s fair, but does that mean that I can’t do research with them? I don’t think so.
This is not to say there aren’t types of research with prisoners that are illegitimate. Of course there are. But in Reiter’s critique, she points out that some people want to use the money [provided as compensation for research participation] for things that she feels should be a human right. But that is the situation people are in. The question is what does the research do, and how does it treat people? It’s not, is the prison system legitimate?
As you just noted, the lack of treatment options, privacy issues, and many other negative factors seem like problems with jail policies and socioeconomic and sociopolitical factors. Do you imagine ways in which the research or health care communities could or should inform or address these issues?
I think that that’s a separate issue for me as a researcher. I do feel that the prison system is excessively punitive and degrading. I feel this about some of our mental health institutions too. The system treats you as less than a full person. To me, that’s the core issue—everybody deserves to be treated like a human being and dealt with like a human being, as someone who thinks and feels. The question for research ethics is, has the researcher dealt with the person as a full human being? The question is not, is the whole context illegitimate?
I don’t mean to say that I can’t imagine a situation in which the entire context is so awful that cooperating with it to do research is illegitimate. Could I have done research during the Nazi regime? Probably not. But on the other hand, if one was doing research that exposed what was happening at that time, that could have been a good thing. That system was fundamentally illegitimate in a way that I don’t think the prison system is fundamentally illegitimate.
Some quotations from your interviews indicate that people incorrectly thought they might gain something from prison staff, doctors, researchers or others for their participation. While no one seemed to be forced (“participate or else”), are you concerned that people participate with incorrect beliefs about how a study will benefit them?
They may have been informed but not truly understood. It is very hard to assess what we mean by “fully understand.” Did these prisoners fail to understand more than a subject in a standard diabetes trial in the hospital? We do find an education effect on almost any understanding measure, so probably they understood a little less, but it is hard to know.
I have an unorthodox view about this. I think that informed consent is a ritual (in a sociological sense). It is something we do to demonstrate our commitment to certain values, in this case, human dignity, individualism, and so forth. The ritual is really important, but informed consent should never be the basis of thinking that subjects are adequately protected. I don’t think informed consent protects subjects.
I do want researchers to do their very best to explain and make sure that people understand. But could we really say that people can’t participate in research unless they fully understand the decision? Most of my life I don’t fully understand. I had the terms of my mortgage explained to me, and I didn’t fully understand, but that didn’t stop me from signing the mortgage. Would I like them to understand more? Absolutely. Do I think that precludes them from being research participants? Not if they agreed to do this without someone lying to them or coercing them.
Some of the scenarios mentioned in your article, such as research participants’ names being called out over the loudspeaker, indicate that there are some unique privacy concerns for incarcerated populations. Do these raise a significant concern for you, and if so, is there anything to be done about them?
That is the way the prison operates. A few people said they got grief [when it was announced that they were participating] because they were “cooperating with the man.” Others saw this as prestigious, as an announcement that they were special. At least one person said that he felt that the people critical of his participation were jealous. So again, it’s one of these things where people’s thoughts and motives are much more complex than one would consider in abstract.
What are the most important takeaways and next steps for both research with incarcerated populations and for research (like yours) that studies research on these populations?
The most important takeaway is the diversity of people’s thoughts and feelings when they’re in this situation. One needs to be careful not to stereotype their decisions and thoughts. I’d really love to hear from some of the people who refused to participate in other research, but that is a tough project to get going, particularly in prisons. Of all the 800 to 900 interviews we’ve done, about 15 of those have been with people who have refused to be in other research studies. The courts, prisons, and prisoners are not always enthusiastic or receptive to research.
Rachel Zacharias is a project manager and research assistant at The Hastings Center.
Published on: April 20, 2017
Published in: Clinical Trials and Human Subjects Research