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Cited by 29Ethics in Clinical ResearchDisability Rights and RepresentationMental Health and Patient Involvement

Including the blind community in precision medicine research: findings from a national survey and recommendations

Open access
Sabatello, Maya, Blake, Lou Ann, Chao, Audrey, Silverman, Arielle, Ovadia Mazzoni, Ronit, Zhang, Yuan, Chen, Ying, Appelbaum, Paul S.·2019·Genetics in Medicine
DOI 10.1038/s41436-019-0533-yPMC PMC6834864
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Abstract

Purpose Despite ongoing efforts to increase diversity of cohorts in precision medicine research (PMR), little is known about the obstacles to inclusion of blind people and those with low vision ("the blind community") in PMR. The blind community comprises ~10% of the US adult population and its members commonly experience health disparities. Understanding barriers to inclusion of this community is necessary to facilitate their participation. Methods An online survey was developed in disability-accessible formats. Key questions included views on PMR; willingness to participate, provide data, and engage in the study; data sharing and consent; and perceived barriers to participation. Analyses describe results for all participants. Results Two hundred seventy-one blind/low-vision participants completed the survey. Participants expressed strong support for PMR, and willingness to participate in PMR, to provide lifestyle, biological and medical information, to engage with the study, and to have their data shared with other researchers. Preferences for data sharing and consent models varied. Significantly, 65% identified 3-6 barriers to participation, particularly inaccessible transportation, clinics, and facilities; inaccessible information; and attitudinal and institutional barriers. Conclusion Removing the identified barriers is key. Measures that could increase inclusivity of blind people and those with low vision in PMR are suggested.

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  • Significantly 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 [76]

    The Results (Data Provision; page not available) report that fewer blind/low-vision participants were willing to provide heart-rate or step-count data from a Fitbit or smartphone than to provide lifestyle information. But the paper does not assess support for smartphone apps tracking behavior or environmental influences generally, and its reported significance test compares participant groups—not willingness to provide different types of data. (LLM, conf=0.86)

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  • Among 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 [76]

    In Results > PMR and Willingness to Participate (page unavailable), 90% of the surveyed blind/low-vision participants who supported the described precision-medicine study said they would participate if asked. Results > Data Provision reports that most were willing to provide data and biological samples. The survey does not establish readiness to join clinical trials or support extending these findings to patients generally. (LLM, conf=0.86)

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  • Professionals, patients and representatives from patient organizations are concerned about whether health insurance companies will cover the costs or patients can pay for them.

    “For example, professionals [45, 120], patients and representatives from patient organizations are concerned about whether health insurance companies will cover the costs [51, 63, 76] or patients can pay for them [61, 95, 96].”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [76]

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Research works printed but not linked: 2

  1. [4]Centers for Disease Control and Prevention, Morb Mortal Wkly Rep. 2009 58(16): 421– 426.
  2. [6]American Foundation for the Blind. Research Navigator: Just how many blind folks are there anyway? http://www.afb.org/info/blindness-statistics/research-navigator-a-quarterly-series-on-research-in-blindness-and-visual-impairment/research-navigator-just-how-many-blind-folks-are-there-anyway/235#CDC2http://www.disabilitystatistics.org/reports/acs.cfm?statistic=1.

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Authors
Sabatello, M., Blake, L. A., Chao, A., Silverman, A., Ovadia Mazzoni, R., Zhang, Y., Chen, Y., & Appelbaum, P. S.
Affiliations
  • Columbia University Irving Medical Center (US)
  • National Federation of the Blind (US)
  • Columbia University (US)
  • New York State Psychiatric Institute (US)
Corresponding author
Sabatello, Maya
ORCID
Venue
Genetics in Medicine
Publisher
Elsevier BV
Published
2019-11
Volume
21
Issue
11
Pages
2631-2638
ISSN
1098-3600 (ISSN-L)
DOI
10.1038/s41436-019-0533-y
PMC
PMC6834864
OpenAlex
W2945589959
Cited by
29
References
33
Citations by year
2026: 3 · 2025: 3 · 2024: 3 · 2023: 14 · 2022: 3 · 2021: 2 · 2020: 1
FWCI
1.38
Type
journal article
Language
en
Open access
Licence
Locations
  • Genetics in Medicine (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • NHGRI (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
blind people, low vision, research participant inclusion, barriers to participation, health disparities, data sharing, informed consent, accessibility, disability, diversity in research, willingness to participate
MeSH terms
Adult, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, Research Design, Research Personnel, Bias, Cultural Diversity, Visually Impaired Persons, Persons with Visual Disabilities, Precision Medicine

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