Federally Qualified Health Centers provide primary care, dental care, and behavioral health services to medically underserved populations. Most health center patients are underinsured or uninsured, and 63% of the health center patients are members of racial and ethnic minorities compared to 40% of the general U.S. population. To help solve the enduring lack of racial and ethnic diversity in biospecimens available for research, the NIH All of Us (AoU) precision medicine initiative partnered with FQHCs to recruit and engage their patients. To understand what motivates FQHC patients to enroll in AoU, semi-structured interviews with both enrollees and non-enrollees in AoU were conducted at an AoU partner FQHC site. Key motivations and concerns to enroll in the research program emerged. Notably, one-third of participants in our study understood AoU as an extension of clinical care, suggesting that some FQHC patient-participants believe that research participation provides benefits similar to seeking medical treatment, and participate for that reason. This presentation will report our data evidencing this conflation of research and clinical care and situate it in the broader ELSI and bioethics literature with topics such as therapeutic misconception, embedded research, and learning health systems. Ultimately, we argue that the “conflation” of research and care may be reasonable, suggesting that the barrier between research and care needs rethinking. Concepts such as therapeutic misconception and just compensation may also need revisiting, especially with research initiatives like the AoU program that embed themselves in a healthcare facility and promise clinical benefits to their participants.
Authors: Danielle Pacia, The Hastings Center; Carolyn Neuhaus, The Hastings Center; Johanna Crane, Alden March Bioethics Institute, Albany Medical College; Camila Salvagno, RIP Medical Debt
