Examining Federally Qualified Health Center Patient-Participant Motivations in the All of Us Research Program
Friday, October 13, 2023
8:00 AM – 9:15 AM ET
Location: Galena (Fourth Floor)
The National Institutes of Health All of Us (AoU) program is a precision medicine initiative aiming to enroll one million or more Americans as research participants. Those who enroll are asked to share their electronic health record and provide biosamples for genetic analysis. Participants are offered a $25 incentive and provided the option to be informed of ancestry and medically actionable genetic information. Responding to a lack of racial and ethnic diversity in biobank specimens, AoU partnered with Federally Qualified Health Centers (FQHC), a type of community health center, to help achieve recruitment targets. In 2016, 92% of health center patients had incomes at or below 200% of the federal poverty level. Furthermore, health center patients are more likely to be part of an ethnic or racial minority group than the general US population.
To understand what motivates them to enroll in AoU, semi-structured interviews were conducted with FQHC patient-participants enrolled in the program. Preliminary findings include the following: (1) the cash incentive, peer recommendation, a general desire to help others, and access to ancestry information were top motivations for enrollment; (2) participants encountered significant technological barriers to engaging with the program; and (3) participants exhibited varying levels of understanding about the availability and meaning of medically actionable genetic results.
This presentation will discuss the different motivations that compel FQHC patients to participate in the AoU research program, and will put these findings into the context of bioethics literature on incentives for research participation, therapeutic misconception, and equitable research collaborations.
Johanna Crane – Alden March Bioethics Institute – Albany Medical College; Carolyn Neuhaus – Research Department – The Hastings Center