by Ali Hall, Educational Programs Assistant
At a recent discussion at one of PRIM&R’s staff meetings, we took up the issue of how to refer to those who volunteer to participate in research. More specifically, our conversation started with the fact that PRIM&R uses the term “research subject,” rather than the term “research participant.” The significance of this very conscious choice of language had previously managed to escape me, and so I found the ensuing discussion incredibly enlightening.
While research “subject” is the more traditional of the two terms, there has been a shift over the past 25 years or so to use research “participant” when referring to individuals who take part in research, because, many argue, it is more respectful of research volunteers. This shift can be directly traced to the work of the HIV/AIDS activist and cancer survivor communities in the 1980s and 1990s, who demanded not only access to clinical trials, but participation in setting research agendas. I saw first-hand evidence of this shift recently when I received a request from a conference faculty member to change the title of a session at PRIM&R’s 2013 Advancing Ethical Research Conference—specifically, to replace the word “subject” with the word “participant.” In making the request, the individual expressed to me that the term “subject” tends to perpetuate an unhelpful view of the research enterprise and is most likely part of why only 5% of individuals participate in clinical trials nationwide. This person felt strongly that, because it emphasizes the passivity of the individual who is taking part in research, using the term “subject” discourages people from taking part in research and thereby slows the rate of scientific discovery.
I must admit, I found this argument compelling. So why does PRIM&R continue to refer to volunteers as “subjects,” I wondered. Well, what I learned during our staff meeting is that PRIM&R uses “subject” rather than “participant” for a number of carefully considered reasons. For one, the term “participant” is not found anywhere in the federal regulations governing human subjects research, known as the “Common Rule.” For another, and more substantively, PRIM&R’s view is that the term “subject,” far from being disrespectful of those who volunteer for research, much more accurately and honestly represents the true nature of the research enterprise, including the fact that there is always a power and knowledge differential between those conducting the research and those on whom the research is conducted. In addition, using the term “subject” to refer to those who volunteer to take part in research makes salient the fact that, due to their position of relative vulnerability within the research enterprise, there need to be independent mechanisms to ensure the individuals who volunteer for research are respected and protected. We do not, of course, wish to diminish or ignore the potential for exploitation of research subjects (especially since that is something PRIM&R actively works hard to prevent); indeed, we believe that use of the term “participant” to refer to research volunteers may leave them more vulnerable to exploitation, since it may obscure the need for formal protections.
Now, this doesn’t mean, I also learned, that PRIM&R believes that the term “participant” is never appropriate when referring to those who volunteer for research. In the context of community-based participatory research, for instance, where communities who will be the subjects of the research are integrally involved in both designing the research study and in carrying it out, it seems appropriate to refer to those individuals as “participants” in the research. In addition, we’re currently seeing a rise in “participant-led” and “participant-centered” research, where those being studied act as a driving force behind the research. Examples include self-surveillance, analyses of genomic data, and genome-wide association studies, to name a few, all of which represent a more bottom-up approach to research, as opposed to the more top-down approach favored by traditional scientists.
While I can see why people may think the term “subject” is disrespectful, or even pejorative, when describing people who take part in research, I now understand and appreciate PRIM&R’s choice to stand by it. Being forced to stop and consider the potential implications of using one term over another, has also raised a series of questions relating to human research subjects and the part they play in the overarching research apparatus for me. For instance, are there additional arguments for using one term over the other? Do most researchers think the choice of terminology has significant bearing on the decision of the average individual to participate in research? Please share your thoughts.
by Ali Hall, Educational Programs Assistant