Despite the understanding that medical research can provide breakthrough treatments and has the potential to benefit us all, just a small proportion of the public ever participates in research studies. In a prior post, I discussed points cancer patients should consider when contemplating becoming involved in a clinical trial. It turns out that healthy volunteers are also needed to understand such things as the predictors of cancer and what, for example, the public’s understanding of early detection and preventive behaviors is.
As a researcher, I devote some of my time enrolling in as a participant in research studies, both to contribute to an enterprise that I believe in, but also to learn about how other investigators conduct their work. I appreciate gaining an understanding of how researchers treat their participants as a way of improving the conduct of my own work.
A few years ago, I became involved in the Cancer Research Study (CPS-3) conducted by the American Cancer Society. This is a large-scale study of more than 300,000 people without cancer designed to understand how lifestyle, environment, genetics, and other factors contribute to cancer risk.1 Participation was easy, involving a blood draw, a questionnaire about my health history, lifestyle, and behaviors, and an understanding that I would be contacted periodically for follow up surveys over the life to the longitudinal study. There was no compensation except the feeling of being part of something larger than myself, the belief I would contribute meaningfully to science, and perhaps knowing that my data contributed to scientific publications that I could later look up and read.
Sometimes, research participation provides financial or other rewards. One study I was involved with tracked hypertension outside of the doctor’s office when one is out there experiencing the stresses and strains of everyday life. It was somewhat arduous, involving several clinic visits, blood draws, urine collections, wearing a blood pressure monitor over a 24-hour period, and being probed to answer questionnaires about my current situation and emotional state several times a day. In exchange, I was provided with a full health workup with summarized results, including values of key biomarkers like cholesterol levels and an echocardiogram, that I could share with my doctor or use as a baseline to compare with later changes. More recently I participated in the Food and Microbiome Longitudinal Investigation (FamiLi), an investigation of the bacteria that reside in our gut. The study is designed to learn how the human microbiome is related to various diseases, including cancer, heart disease, and diabetes. While less time-consuming, this study was a bit more…intrusive: in addition to a brief questionnaire, I was asked to provide a stool sample and mouth rinse, which was then mailed back to the investigators. In return, I was provided with a $25 gift card; not bad, but nominal in comparison to the cost of the car repair that I used it to defray. Ethically, researchers must avoid offering incentives for research participation that would be so large that they could be seen as enticing people to do something against their better judgment.
Those living near a university or a hospital may find advertisements posted on bulletin boards, on the radio, or on the institution’s website. Alternatively, there are central registries, such as ResearchMatch, where anyone can sign up and indicate their willingness to be contacted by researchers based on a brief profile of some of one’s demographic and health characteristics. ClinicalTrials.gov, although predominantly a place where patients may find studies of experimental treatments, also recruits healthy volunteers, for instance, a study determining biomarkers of processed meat intake (which has been linked to adverse health outcomes, including cancer). The All of Us Research Program is collecting data from one million U.S. residents. The goal is to develop precision medicine by studying individual differences in lifestyle, environment, and biology (https://allofus.nih.gov/).
It may be easier for someone familiar with and trusting of the scientific enterprise (as well as a research nerd) such as myself to become involved in empirical studies. Admittedly, turning over bodily fluids for biological and genetic analysis may prompt worry and fear in others. Ethical oversight is more comprehensive and sound than it was in the past, but past abuses and well-publicized incidents of scientific fraud certainly can provide fodder for avoiding such endeavors altogether. Participating in research is an individual decision both for cancer patients and currently healthy volunteers, but can lead to a sense of satisfaction and open one’s eyes to the process of advancing science.
1. Patel, A. V., Jacobs, E. J., Dudas, D. M., Briggs, P. J., Lichtman, C. J., Bain, E. B., … Gapstur, S .M. (2017)The American Cancer Society's Cancer Prevention Study 3 (CPS-3): Recruitment, study design, and baseline characteristics. Cancer, 123, 2014-2024. doi: 10.1002/cncr.30561. Epub 2017 Feb 7.