Exploring patient deliberation prior to predictive genetic testing in the absence of immediate clinical utility
Exploring patient deliberation prior to predictive genetic testing in the absence of immediate clinical utility
Introduction: Some patients appear to ‘know’ whether they wish to have a genetic test or not, whilst others deliberate extensively before deciding. Little is understood about how patients deliberate such decisions. Previous research has focused on the result of the deliberation process, but little attention has been paid to the process of arriving at a decision itself and the role medical and lifeworld frames play in this deliberation. Our research explored both the deliberation and eventual decision made by patients at risk of Huntington’s disease.
Methods: We recruited 15 patients who were considering predictive testing for Huntington’s disease from four UK regional genetics services. We gathered qualitative data from patients’ clinical consultations and reflective diaries to explore deliberation and patient interviews to explore decisions. We took an ethnographic approach to consultations, applied discourse analysis to clinic consultations and reflective diaries, and account analysis to the final interview with participants.
Results: Our findings show how consultations, discussions with others, misconceptions, and information seeking influence four key areas: 1. Patient knowledge of the options available; 2. Forecasting of emotions regarding different options; 3. Imagined futures and 4. Hypothetical scenarios (if/then). We compared clinical consultations with reflective diaries to further explore deliberation inside and outside the clinical appointment.
Conclusion: Our findings illustrate how medical frames sit alongside patient lifeworld frames and how this influences deliberation and shared decision making. We make recommendations regarding the development of decision support tools for use in clinical practice.
ESRC Grant ES/R003092/1
Clinical Ethics, Law and Society Department, University of Southampton
Ballard, Lisa
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Doheny, Shane
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Clarke, Angus
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Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
8 June 2020
Ballard, Lisa
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Doheny, Shane
a7cab2c1-b348-41c5-85d3-322900282f64
Clarke, Angus
30f3d3dd-3caa-4465-82e8-a8c4316dfaa1
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ballard, Lisa, Doheny, Shane, Clarke, Angus and Lucassen, Anneke
(2020)
Exploring patient deliberation prior to predictive genetic testing in the absence of immediate clinical utility.
In European Society for Human Genetics (ESHG) (Virtual).
Clinical Ethics, Law and Society Department, University of Southampton..
Record type:
Conference or Workshop Item
(Paper)
Abstract
Introduction: Some patients appear to ‘know’ whether they wish to have a genetic test or not, whilst others deliberate extensively before deciding. Little is understood about how patients deliberate such decisions. Previous research has focused on the result of the deliberation process, but little attention has been paid to the process of arriving at a decision itself and the role medical and lifeworld frames play in this deliberation. Our research explored both the deliberation and eventual decision made by patients at risk of Huntington’s disease.
Methods: We recruited 15 patients who were considering predictive testing for Huntington’s disease from four UK regional genetics services. We gathered qualitative data from patients’ clinical consultations and reflective diaries to explore deliberation and patient interviews to explore decisions. We took an ethnographic approach to consultations, applied discourse analysis to clinic consultations and reflective diaries, and account analysis to the final interview with participants.
Results: Our findings show how consultations, discussions with others, misconceptions, and information seeking influence four key areas: 1. Patient knowledge of the options available; 2. Forecasting of emotions regarding different options; 3. Imagined futures and 4. Hypothetical scenarios (if/then). We compared clinical consultations with reflective diaries to further explore deliberation inside and outside the clinical appointment.
Conclusion: Our findings illustrate how medical frames sit alongside patient lifeworld frames and how this influences deliberation and shared decision making. We make recommendations regarding the development of decision support tools for use in clinical practice.
ESRC Grant ES/R003092/1
Slideshow
ESHG 2020 Final
More information
Published date: 8 June 2020
Additional Information:
Lisa Ballard presented her invited talk 'Exploring patient deliberation prior to predictive genetic testing in the absence of immediate clinical utility' from 5:00pm to 6:30pm on Monday 8th June.
Venue - Dates:
European Human Genetics Virtual Conference: ESHG 2020.2 - Live in Your Living Room, online, Southampton, United Kingdom, 2020-06-06 - 2020-06-09
Identifiers
Local EPrints ID: 467351
URI: http://eprints.soton.ac.uk/id/eprint/467351
PURE UUID: f4740793-7e36-4433-a069-e9b30a7750e2
Catalogue record
Date deposited: 06 Jul 2022 17:18
Last modified: 17 Mar 2024 03:37
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Contributors
Author:
Shane Doheny
Author:
Angus Clarke
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