The Motivations Study:
Understanding “Engagement” in the All of Us Research Program
Funder: National Human Genome Research Institute & Office of the Director, National Institutes of Health (R21)
The Motivations study will map the contours of why people, especially racialized minorities, decline, enroll, or stay engaged in the All of Us Research Program. All of Us is an initiative led by the National Institutes of Health to amass health, genetic, and environmental data from one million people living in the United States. These data will be used to create a biobank (a library of biological samples). Biobanks are a crucial tool in the development of precision medicine therapies and interventions targeting the underlying genetic and/or environmental causes of disease. All of Us seeks to diversify health research and reduce health disparities by enrolling people from populations that have been historically underrepresented in biomedical research and thus left out of advances in precision medicine to date. The initial genomic dataset from All of Us was published in March 2022.
Six FQHCs around the country receive All of Us funding to recruit and engage their patients in the research program. Participants are also offered the option to receive genetic information.
The Motivations study seeks to understand:
- What motivates patients at FQHCs to enroll, decline, or continue to participate in All of Us
- How participants interpret the commitment of All of Us to engaging research participants as “partners” in health research
This project will contribute to advancing diverse participation in precision medicine research, identify new strategies to meaningfully engage underrepresented populations in All of Us, and ensure that these strategies are attentive to participants’ values and expectations.
Motivations is a qualitative study of recruitment and retention into All of Us at one FQHC that is part of the All of Us recruitment program. The study will collect in-depth qualitative data, via interviews with key staff and participants, observations of recruitment and retention efforts, and focus groups with participants. (The Motivations Study was paused due to the Covid-19 pandemic. Project updates will be posted on this page.)
Key informant interviews conducted in early 2020 (pre-pandemic) yielded the insight that FQHC staff are concerned about the barriers that patients who are participants will face when All of Us returns medically relevant genomic information, such as information about increased risk of cancer or heart disease. These early findings led to a supplemental study. See here: “Meeting the Follow-up Needs of All of Us Participants from Federally Qualified Health Centers.”
Carolyn Neuhaus, PhD
Research Scholar, The Hastings Center
Johanna Crane, PhD
Associate Professor, Alden March Bioethics Institute, Albany Medical College
Danielle Pacia, MBE
Project Manager-Research Assistant, The Hastings Center