Literature DB >> 34297059

The Impact of Communicating Uncertainty on Public Responses to Precision Medicine Research.

Chelsea L Ratcliff1, Bob Wong2, Jakob D Jensen3, Kimberly A Kaphingst3,4.   

Abstract

BACKGROUND: Precision medicine research depends upon recruiting large and diverse participant cohorts to provide genetic, environmental, and lifestyle data. How prospective participants react to information about this research, including depictions of uncertainty, is not well understood.
PURPOSE: The current study examined public responses to precision medicine research, focusing on reactions toward (a) uncertainty about the scientific impact of sharing data for research, and (b) uncertainty about the privacy, security, or intended uses of participant data.
METHODS: U.S. adults (N = 674; 51.9% male; 50% non-Hispanic white; Mage = 42.23) participated in an online experimental survey. Participants read a manipulated news article about precision medicine research that conveyed either certainty or uncertainty of each type (scientific, data). Participants then rated their attitudes toward the research, trust in the researchers, and willingness to join a cohort. We tested direct and mediated paths between message condition and outcomes and examined individual characteristics as moderators.
RESULTS: Overall attitudes were positive and a majority of participants (65%) reported being somewhat or very likely to participate in precision medicine research if invited. Conveying uncertainty of either type had no overall main effect on outcomes. Instead, those who reported perceiving greater uncertainty had lower attitudes, trust, and willingness to join, while those with more tolerance for uncertainty, support for science, and scientific understanding responded favorably to the scientific uncertainty disclosure.
CONCLUSIONS: Findings suggest responses to precision medicine research uncertainty are nuanced and that successful cohort enrollment may be well-supported by a transparent approach to communicating with prospective participants. © Society of Behavioral Medicine 2021. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Entities:  

Keywords:  Communication; Genomics; Precision medicine; Research recruitment; Uncertainty

Mesh:

Year:  2021        PMID: 34297059      PMCID: PMC8557361          DOI: 10.1093/abm/kaab050

Source DB:  PubMed          Journal:  Ann Behav Med        ISSN: 0883-6612


  44 in total

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Authors:  M H Mishel
Journal:  Image J Nurs Sch       Date:  1990

2.  Tolerance of uncertainty: A systematic review of health and healthcare-related outcomes.

Authors:  Tania D Strout; Marij Hillen; Caitlin Gutheil; Eric Anderson; Rebecca Hutchinson; Hannah Ward; Hannah Kay; Gregory J Mills; Paul K J Han
Journal:  Patient Educ Couns       Date:  2018-04-06

3.  Laypersons' responses to the communication of uncertainty regarding cancer risk estimates.

Authors:  Paul K J Han; William M P Klein; Thomas C Lehman; Holly Massett; Simon C Lee; Andrew N Freedman
Journal:  Med Decis Making       Date:  2009-05-21       Impact factor: 2.583

Review 4.  Evidence-based medicine and big genomic data.

Authors:  John P A Ioannidis; Muin J Khoury
Journal:  Hum Mol Genet       Date:  2018-05-01       Impact factor: 6.150

5.  Representing a "revolution": how the popular press has portrayed personalized medicine.

Authors:  Alessandro R Marcon; Mark Bieber; Timothy Caulfield
Journal:  Genet Med       Date:  2018-01-04       Impact factor: 8.822

6.  Genomic research and wide data sharing: views of prospective participants.

Authors:  Susan Brown Trinidad; Stephanie M Fullerton; Julie M Bares; Gail P Jarvik; Eric B Larson; Wylie Burke
Journal:  Genet Med       Date:  2010-08       Impact factor: 8.822

7.  Precision medicine: opportunities, possibilities, and challenges for patients and providers.

Authors:  Samantha A Adams; Carolyn Petersen
Journal:  J Am Med Inform Assoc       Date:  2016-03-14       Impact factor: 7.942

Review 8.  Security Techniques for the Electronic Health Records.

Authors:  Clemens Scott Kruse; Brenna Smith; Hannah Vanderlinden; Alexandra Nealand
Journal:  J Med Syst       Date:  2017-07-21       Impact factor: 4.460

Review 9.  What People Want to Know About Their Genes: A Critical Review of the Literature on Large-Scale Genome Sequencing Studies.

Authors:  Courtney L Scherr; Sharon Aufox; Amy A Ross; Sanjana Ramesh; Catherine A Wicklund; Maureen Smith
Journal:  Healthcare (Basel)       Date:  2018-08-08

Review 10.  "Let's get the best quality research we can": public awareness and acceptance of consent to use existing data in health research: a systematic review and qualitative study.

Authors:  Elizabeth M Hill; Emma L Turner; Richard M Martin; Jenny L Donovan
Journal:  BMC Med Res Methodol       Date:  2013-06-04       Impact factor: 4.615

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  1 in total

1.  Covid-19 pandemic lessons: uncritical communication of test results can induce more harm than benefit and raises questions on standardized quality criteria for communication and liability.

Authors:  Franz Porzsolt; Gerit Pfuhl; Robert M Kaplan; Martin Eisemann
Journal:  Health Psychol Behav Med       Date:  2021-09-21
  1 in total

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