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Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom

Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom
Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom
This article explores the views and experiences of healthcare professionals and clinical scientists in genetics about the existence of a duty and/or responsibility to recontact former patients when the genetic information relevant to their health, or that of family members, changes in a potentially important manner. It is based on N=30 semi-structured interviews guided by vignettes of recontacting scenarios. The sample included healthcare professionals in the United Kingdom from different medical specialties (clinical genetics, other ‘mainstream’ specialties now offering genetic testing), and scientists from regional genetics laboratories. While viewing recontacting as desirable under certain circumstances, most respondents expressed concerns about its feasibility within the current constraints of the National Health Service (NHS). The main barriers identified were insufficient resources (time, staff, and suitable IT infrastructures) and lack of clarity about role boundaries and responsibilities. All of these are further complicated by genetic testing being increasingly offered by mainstream specialties. Reaching a consensus about roles and responsibilities of clinical specialties with regard to recontacting former patients in the light of evolving genetic information, and about what resources and infrastructures would be needed, was generally seen as a pre-requisite to developing guidelines about recontact.
1018-4813
1-5
Carrieri, Daniele
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Dheensa, Sandi
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Doheny, Shane
a7cab2c1-b348-41c5-85d3-322900282f64
Clarke, Angus J.
dcb85106-5494-47f5-9fc5-dc355c5e8f81
Turnpenny, Peter D.
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Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Kelly, Susan E.
90e3be8e-0e1e-4278-ad82-83b76d79df1d
Carrieri, Daniele
303907f3-1f8e-40af-afcb-0c4571990566
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Doheny, Shane
a7cab2c1-b348-41c5-85d3-322900282f64
Clarke, Angus J.
dcb85106-5494-47f5-9fc5-dc355c5e8f81
Turnpenny, Peter D.
167584d7-ed26-49e9-bdf4-f441b7f1e7be
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Kelly, Susan E.
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Carrieri, Daniele, Dheensa, Sandi, Doheny, Shane, Clarke, Angus J., Turnpenny, Peter D., Lucassen, Anneke and Kelly, Susan E. (2017) Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom. European Journal of Human Genetics, 1-5. (doi:10.1038/ejhg.2016.188).

Record type: Article

Abstract

This article explores the views and experiences of healthcare professionals and clinical scientists in genetics about the existence of a duty and/or responsibility to recontact former patients when the genetic information relevant to their health, or that of family members, changes in a potentially important manner. It is based on N=30 semi-structured interviews guided by vignettes of recontacting scenarios. The sample included healthcare professionals in the United Kingdom from different medical specialties (clinical genetics, other ‘mainstream’ specialties now offering genetic testing), and scientists from regional genetics laboratories. While viewing recontacting as desirable under certain circumstances, most respondents expressed concerns about its feasibility within the current constraints of the National Health Service (NHS). The main barriers identified were insufficient resources (time, staff, and suitable IT infrastructures) and lack of clarity about role boundaries and responsibilities. All of these are further complicated by genetic testing being increasingly offered by mainstream specialties. Reaching a consensus about roles and responsibilities of clinical specialties with regard to recontacting former patients in the light of evolving genetic information, and about what resources and infrastructures would be needed, was generally seen as a pre-requisite to developing guidelines about recontact.

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More information

Accepted/In Press date: 22 November 2016
e-pub ahead of print date: 4 January 2017
Organisations: Cancer Sciences

Identifiers

Local EPrints ID: 404354
URI: http://eprints.soton.ac.uk/id/eprint/404354
ISSN: 1018-4813
PURE UUID: 21a0dffe-f3fd-4d40-9ce5-e63a507de1e5

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Date deposited: 06 Jan 2017 11:41
Last modified: 16 Dec 2019 19:32

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Contributors

Author: Daniele Carrieri
Author: Sandi Dheensa
Author: Shane Doheny
Author: Angus J. Clarke
Author: Peter D. Turnpenny
Author: Anneke Lucassen
Author: Susan E. Kelly

University divisions

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