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Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom

Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom
PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom.

METHOD: A Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom's 23 clinical genetics services, with follow-up with senior clinical genetics staff.

RESULTS: The majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a "trigger"). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.

CONCLUSION: This research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med advance online publication
clinical genetics, ethics, next-generation swquencing, recontact, survey
1098-3600
1-6
Carrieri, Daniele
303907f3-1f8e-40af-afcb-0c4571990566
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Clarke, Angus J.
dcb85106-5494-47f5-9fc5-dc355c5e8f81
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Doheny, Shane
a7cab2c1-b348-41c5-85d3-322900282f64
Turnpenny, Peter D.
167584d7-ed26-49e9-bdf4-f441b7f1e7be
Kelly, Susan E.
90e3be8e-0e1e-4278-ad82-83b76d79df1d
Carrieri, Daniele
303907f3-1f8e-40af-afcb-0c4571990566
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Clarke, Angus J.
dcb85106-5494-47f5-9fc5-dc355c5e8f81
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Doheny, Shane
a7cab2c1-b348-41c5-85d3-322900282f64
Turnpenny, Peter D.
167584d7-ed26-49e9-bdf4-f441b7f1e7be
Kelly, Susan E.
90e3be8e-0e1e-4278-ad82-83b76d79df1d

Carrieri, Daniele, Lucassen, Anneke M., Clarke, Angus J., Dheensa, Sandi, Doheny, Shane, Turnpenny, Peter D. and Kelly, Susan E. (2016) Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom. Genetics in Medicine, 1-6. (doi:10.1038/gim.2015.194). (PMID:26890453)

Record type: Article

Abstract

PURPOSE: To ascertain whether and how recontacting occurs in the United Kingdom.

METHOD: A Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom's 23 clinical genetics services, with follow-up with senior clinical genetics staff.

RESULTS: The majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a "trigger"). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.

CONCLUSION: This research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med advance online publication

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Accepted/In Press date: 7 November 2015
e-pub ahead of print date: 18 February 2016
Keywords: clinical genetics, ethics, next-generation swquencing, recontact, survey
Organisations: Faculty of Medicine

Identifiers

Local EPrints ID: 388639
URI: http://eprints.soton.ac.uk/id/eprint/388639
ISSN: 1098-3600
PURE UUID: 7fe55110-342e-41d8-8c94-7d941add96e3

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Date deposited: 01 Mar 2016 11:23
Last modified: 16 Dec 2019 20:05

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Contributors

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

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