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PurposeTo ascertain whether and how recontacting occurs in the United Kingdom.MethodA 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.ResultsThe 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.ConclusionThis 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 18 9, 876-881.

Original publication

DOI

10.1038/gim.2015.194

Type

Journal article

Journal

Genetics in medicine : official journal of the American College of Medical Genetics

Publication Date

09/2016

Volume

18

Pages

876 - 881

Addresses

Egenis, University of Exeter, Exeter, UK.

Keywords

Humans, Duty to Recontact, Genetics, Medical, Health Services, Surveys and Questionnaires, United Kingdom, Workforce