Year: 2023
Type: article
Abstract: In "Think Pragmatically: Investigators' Obligations to Patient-Subjects When Research is Embedded in Care," Morain and Largent persuasively argue that the prevailing ways of conceptualizing investigators' responsibilities to participants in explanatory research have limited application when research is embedded in care (2023).They call for "new paradigms of accountability" that go beyond the traditional investigator-subject dyad, and suggest institutions hosting embedded research may assume some level of obligation when medically relevant findings arise.We agree moving beyond this strict investigator-subject dyad is critical to explain the potential responsibilities that institutions hold when engaged in embedded research.In addition, we argue responsibilities may differ depending on the type of institution where research is embedded.Community health centers (CHCs), non-profit organizations that provide affordable primary healthcare services to medically underserved communities, are one site of embedded research.CHCs are faced with different resource constraints than academic medical centers and other large healthcare systems, arising from their focus on primary care and a patient base that is disproportionately composed of medically underserved populations (Saloner et al.).Furthermore, many CHCs are funded through federal block grants from the Health Resources and Services Administration (HRSA).As such, when conceptualizing obligations tied to embedded research in community health settings, these federal government actors must be taken into account when assigning responsibilities to institutions and researchers.This commentary will present insights from our projects about CHCs that participate in embedded precision medicine research, including discussion of a distributed obligations model wherein government agencies such as HRSA have a level of responsibility once medically relevant findings are discovered.
Authors: Carolyn Neuhaus, Johanna Crane, Danielle Pacia
Institutions: Hastings Center, Albany Medical College
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
OpenAlex ID: W4384283028