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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.

Original publication

DOI

10.1038/ejhg.2016.188

Type

Journal article

Journal

European journal of human genetics : EJHG

Publication Date

02/2017

Volume

25

Pages

275 - 279

Addresses

Egenis, University of Exeter, Exeter, UK.

Keywords

Humans, Attitude of Health Personnel, Health Knowledge, Attitudes, Practice, Duty to Recontact, Genetic Counseling, Genetic Testing, United Kingdom