Guest Post by Rebecca Dresser, Washington University in St. Louis
Not so long ago, medical researchers had a habit of using themselves as guinea pigs. Many scientists saw self-experimentation as the most ethical way to try out their ideas. By going first, researchers could test their hypotheses and see how novel interventions affected human beings.
Today we rely on a more systematic process to decide when to begin human testing, with experts and ethicists evaluating when a trial is justified. But a modified version of self-experimentation still makes sense.
People who conduct human research, as well as those serving on research ethics boards, can learn a lot from volunteering for studies. Just as doctors learn from personal experience as patients, scientists and ethicists learn from personal experience as subjects.
Looking at study requirements and the consent process from the subject’s point of view can be quite educational. I discovered this myself when I was given the option of enrolling in a cancer treatment trial. I had never before realized that enrolling in a trial can delay the start of treatment, because of the extra appointments and procedures research enrollment can require. Nor had I realized that because cancer trials take years to finish, subjects in those trials may lose an opportunity to receive new drugs that emerge during that time. I’ve spent three decades writing about research ethics and serving on research review boards, but I learned new things once I had to decide whether to become a subject myself.
No one should be forced to participate in research, of course. But I encourage research professionals to consider becoming subjects themselves (not necessarily in their own trials, but in studies conducted by others). This modern version of self-experimentation might give researchers and ethicists a better sense of what people need to know before enrolling in a study. It might also give scientists and review committees a deeper understanding of the risks, inconveniences, and benefits that subjects experience in research.
Rebecca’s paper “Personal Knowledge and Study Participation” is now available online first here.