Research Participation as Labor: Models for Respect, Inclusion, and Compensation

The historical exclusion of many populations from research has had significant consequences on the health outcomes of these populations. Whether they were excluded as a policy (e.g., people with disabilities) or out of convenience (e.g., women of reproductive age), resulting health disparities represent failures of both epistemic and structural justice—skewing the medical evidence base and the distribution of benefits and burdens of research participation. In an effort to facilitate broader inclusion and more generally ethical oversight of research processes, many funders now require researcher accountability to participants. These requirements typically call for participant-advocates to have a seat at the table—as grantees, advisors, and/or co-investigators to research.
Participant engagement throughout the research process can facilitate transparency, respect, and accountability of researchers to the participants they rely on. However, models for engagement often view participant-advocates as minimally- or un-paid add-ons to meetings that happen within the niche, academic, and frankly, isolated lab setting. Advocates are often professional proxies for the actual research population, presenting additional challenges of representation and accountability.
This panel explores alternative approaches that fundamentally challenge these models, and present alternatives that genuinely restructure the research process to provide meaningful engagement and accountability to all research participants, as well as advocates. Panelists—an ethicist, a biomedical researcher, and a professional patient-advocate—will explore technologies, organizational structures, and engagement activities that promote these values and pursue more ethical and just research endeavors.