Disability inclusion in precision medicine research: a first national survey
Open accessAbstract
Purpose Including people with disabilities in precision medicine research (PMR) is key for increasing cohorts' diversity, improving understanding of population health, and attaining social justice for the United States' largest health disparities group. We conducted a national survey to explore the views of people with disabilities about PMR. Methods An online survey was developed in disability-accessible formats. Key questions included views on PMR, willingness to participate and to provide data, perceived barriers to participation and potential remedies, and interest in engagement in the study. Analyses described results for all participants and compared results for key demographic characteristics. Results In total, 1294 participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR; to provide lifestyle, biological, and medical information; and to engage with the study. However, 76% identified a total of 3 to 8 barriers to participation, and most would not provide environmental samples or information from their social media account(s) and activity trackers. Differences were observed across racial, ethnic, and gender groups and are discussed. Conclusions Barriers to disability inclusion need to be removed, and further research conducted to better understand concerns about PMR and to develop studies that resonate with the interests and needs of this population.
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The willingness and interest to undergo precision medicine interventions and a positive attitude towards them is high among the majority of patients surveyed.
“The willingness and interest to undergo PM interventions and a positive attitude towards them is high among the majority of patients surveyed [29, 63, 65, 69, 73, 74, 77, 91–93].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [77]
The Results section (‘Perspectives on PMR and Willingness to Participate’; page unavailable) reports that 95% supported the proposed precision-medicine research study and 89% said they would participate. This supports a positive attitude toward, and willingness to join, research among the surveyed people with disabilities, but it does not establish willingness to undergo precision-medicine interventions or treatments. (LLM, conf=0.88)
Experimental — accuracy not yet measuredSignificantly fewer patients support the use of smartphone apps to track lifestyle, behavior or environmental influences.
“Significantly fewer patients support the use of smartphone apps to track lifestyle, behavior or environmental influences [72, 76, 77].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [77]
The Results (Data Provision; page not available) report that 34% of surveyed people with disabilities would provide activity-tracker information, including steps or heart rate from a smartphone. The Discussion compares that figure with 75% for the general public. The paper does not establish a statistically significant difference in support for smartphone apps that track lifestyle, behavior, or environmental influences; it asks about willingness to provide tracker data, and treats environmental samples separately. (LLM, conf=0.85)
Experimental — accuracy not yet measuredAmong patients there is also a high readiness to participate in trials and donate data or biospecimens.
“Among patients there is also a high readiness to participate in trials and donate data or biospecimens [62, 70, 72, 76, 77, 98, 99], but trust in professionals [98, 101], costs, receiving counseling about test results and privacy [101], as well as the donor’s religion and culture [98] seem to be important for the decision.”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [77]
The Results report that 89% of surveyed people with disabilities said they would participate in the proposed precision-medicine research study, and 73% would provide blood or other samples (Results, “Perspectives on PMR and Willingness to Participate” and “Data Provision”). This supports high willingness to participate and donate data or biospecimens, but the survey concerned a proposed research study, not trials, and its findings do not establish readiness among patients generally. (LLM, conf=0.86)
Experimental — accuracy not yet measured
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- Authors
- Sabatello, M., Chen, Y., Zhang, Y., & Appelbaum, P. S.
- Affiliations
- Columbia University Irving Medical Center (US)
- New York State Psychiatric Institute (US)
- Columbia University (US)
- Corresponding author
- Sabatello, Maya
- Venue
- Genetics in Medicine
- Publisher
- Elsevier BV
- Published
- 2019-10
- Volume
- 21
- Issue
- 10
- Pages
- 2319-2327
- ISSN
- 1098-3600 (ISSN-L)
- PMC
- PMC6755064
- OpenAlex
- W2924988683
- Cited by
- 58
- References
- 38
- Citations by year
- 2026: 12 · 2025: 6 · 2024: 2 · 2023: 20 · 2022: 6 · 2021: 5 · 2020: 4 · 2019: 3
- FWCI
- 4.14
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Genetics in Medicine (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Human Genome Research Institute (K01HG008653)
- NHGRI/All of Us Research Program (3P50HG007257-05S1)
- NIH Office of The Director (3P50HG007257-05S1)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Social Sciences › Safety Research › Disability Rights and Representation
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Keywords
- disability inclusion, people with disabilities, barriers to research participation, willingness to participate, data sharing, environmental samples, social media data, wearable activity trackers, health disparities, racial and ethnic differences, gender differences
- MeSH terms
- Adult, Aged, Ethnicity, Female, Persons with Disabilities, Disabled Persons, Humans, Male, Middle Aged, Surveys and Questionnaires, United States, Epidemiologic Research Design, Precision Medicine
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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