Trust but verify? Reliance and agential trust at the intersection of medicine and research

Traditionally, informed consent is an important mechanism for building trust in healthcare research. In the era of learning health systems, research is continuous, and embedded in clinical operations. Technical implementations utilize broadly consented patient data and samples, where researcher and subject are unknown to one another by design.

We argue that centralization of the locus of trust in research across such institutional platforms replaces interpersonal trust with pro forma reliance. Philosophy on rationality of trust demonstrates an inherent risk in trusting relationships. Attempts to eliminate this risk via increased transparency may undermine trust, replacing it with ‘mere’ reliance, without a means to verify that subjects' interests are, in fact, protected. Erosion of agential trust as it affects specific research activities via such platforms is compounded by growing awareness of the structurally unjust and exploitative nature of pervasive data mining, further counteracting efforts to improve diversity and inclusion in research.

We articulate the distinction between reliance and agential trust between individuals and healthcare systems, and propose a technical approach to facilitate trust between individual agents (e.g., patients, physicians, researchers) operating within complex health systems.

In exploring reliance and trust at the intersection of medicine and research, we propose that applications of blockchain technology provide the means to increase reliance in terms of biosample and data stewardship between patients and the research enterprise, while creating new mechanisms to cultivate agential trust between researchers and patients, without compromising privacy. Specific features are highlighted by our ongoing pilot for breast cancer research.

Amelia Hood, MA – Johns Hopkins Berman Institute; William Sanchez – de-bi, co.; Sneha Vaidhyam – University of Pennsylvania; Marielle Gross – Obstetrics and Gynecology, and Center for Ethics and Humanities – University of Pittsburgh School of Medicine and Johns Hopkins Berman Institute