Work

Misaligned Expectations: Motivations of Medically Underserved People to Enroll in the All of Us Research Program

Year: 2026

Type: article

Abstract: It is important to know what motivates people, especially from groups underrepresented in biomedical research, to accept or decline participation in research studies. With this information, engagement strategies, incentives to participate, and benefits of participation can be aligned with what potential research participants value and expect from participating in research. Our project sought to identify what motivated people recruited at a Federally Qualified Health Center (FQHC) to enroll, or not, in the All of Us Research Program (AoU). Qualitative interviews revealed that the most common motivator was the prospect of learning information about their health, especially genetic information that might indicate inherited disease or disease risk, and opportunities for disease prevention. However, our research also revealed that the low-income, medically underserved people typically served by FQHCs face myriad financial, social, and political barriers to reaping the potential health benefits of knowing genetic health information. There is currently a misalignment between what motivates actual and potential research participants to enroll in AoU and the ability of low-income, medically underserved people to use genetic research results to benefit their health. Whether or not learning genetic research results leads to improved health outcomes should be approached as a question rather than an assumption. Embedding research within an unequal society remains a barrier to aligning research participants' motivations with the benefits that participation in research can deliver.

Source: Ethics & Human Research

DOI: 10.1002/eahr.70019

Authors: Carolyn P. Neuhaus, Danielle Pacia, Camila Salvagno, Johanna T. Crane

Institutions: Hastings Center, Yale University, Albany Medical College

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDGs: Good health and well-being, Reduced inequalities

Open Access status: hybrid

Estimated APC paid: $3,240