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

Carrieri, Daniele, Lucassen, Anneke M., Clarke, Angus J., Dheensa, Sandi, Doheny, Shane ORCID: https://orcid.org/0000-0003-0529-7301, 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 18 (9) , pp. 876-881. 10.1038/gim.2015.194

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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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Subjects:	R Medicine > R Medicine (General)
Uncontrolled Keywords:	Clinical genetics; Ethics; Next-generation sequencing; Recontact; Survey
Publisher:	Nature Publishing Group
ISSN:	1098-3600
Date of First Compliant Deposit:	30 May 2017
Date of Acceptance:	7 November 2015
Last Modified:	05 May 2023 15:41
URI:	https://orca.cardiff.ac.uk/id/eprint/100621

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