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Cited by 25Ethics in Clinical ResearchRace, Genetics, and SocietyBiomedical Ethics and Regulation

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

Open access
Sabatello, Maya, Zhang, Yuan, Chen, Ying, Appelbaum, Paul S.·2020·Public Health Genomics
DOI 10.1159/000506599PMC PMC7331043
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Abstract

Purpose: Returning genetic results to research participants is gaining momentum in the USA. It is believed to be an important step in exploring the impact of efforts to translate findings from research to bedside and public health benefits. Some also hope that this practice will incentivize research participation, especially among people from historically marginalized communities who are commonly underrepresented in research. However, research participants’ interest in receiving nongenomic medical and nonmedical results that may emerge from precision medicine research (PMR) is understudied and no study to date has explored the views of people with disabilities about return of genomic and nongenomic results from PMR. Methods: In a national online survey of people with disabilities, participants were queried about their interest in receiving biological, environmental, and lifestyle results from PMR (n = 1,294). Analyses describe findings for all of the participants and comparisons for key demographic characteristics and disability subgroups. Results: The participants expressed high interest in biological and health-related results and less interest in other findings. However, the interest among the study participants was lower than that found in comparable studies of the general population. Moreover, this interest varied significantly across gender, race/ethnicity, and disability subgroups. Possible reasons for these differences are discussed. Conclusion: Insofar as return of results from PMR may impact translational efforts, it is important to better understand the role of sociomedical marginalization in decisions about return of results from PMR and to develop strategies to address existing barriers.

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  • Several quantitative studies indicate that patients want to be fully informed about tests, the results and treatment options.

    “Several quantitative studies indicate that patients want to be fully informed about tests [71], the results [51, 71, 72, 78] and treatment options [29].”

    From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [78]

    The Results (‘Overall Interest in Results from PMR’; page not provided) report that most participants wanted their genetic results (78%), but interest varied substantially by result type. The study surveyed people with disabilities about results from precision medicine research; it does not establish that patients generally want to be fully informed about all results. This citation is attached to ‘the results,’ not to tests or treatment options. (LLM, conf=0.84)

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Cited by

Sorted by citations

Authors
Sabatello, M., Zhang, Y., Chen, Y., & Appelbaum, P. S.
Affiliations
  • Columbia University Irving Medical Center (US)
  • Columbia University (US)
  • New York State Psychiatric Institute (US)
ORCID
Venue
Public Health Genomics
Publisher
S. Karger AG
Published
2020
Volume
23
Issue
1-2
Pages
42-53
ISSN
  • 1422-2795 (ISSN-L)
  • 1662-4246
  • 1662-8063
DOI
10.1159/000506599
PMC
PMC7331043
OpenAlex
W3015990120
Cited by
25
References
4
Citations by year
2026: 2 · 2025: 2 · 2024: 4 · 2023: 6 · 2022: 3 · 2021: 4 · 2020: 3 · 2019: 1
FWCI
3.00
Type
journal article
Language
en
Open access
Licence
Locations
  • Public Health Genomics (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institutes of Health
  • National Human Genome Research Institute (K01HG008653, P50HG007257, RM1HG007257)
  • NIH Office of the Director (3P50HG007257-05S1)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
  • Health Sciences › Medicine › Physiology › Biomedical Ethics and Regulation
Keywords
return of results, people with disabilities, research participant perspectives, translational research, underrepresented groups, research participation
MeSH terms
Adult, Female, Disabled Persons, Persons with Disabilities, Humans, Male, Social Perception, Research Subjects, Genetic Research, Information Seeking Behavior, Precision Medicine, Social Marginalization, Medicalization

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