Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom
European Journal of Human Genetics
Nature Publishing Group for European Society of Human Genetics
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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.
The project is funded by the Economic and Social Research Council of the United Kingdom (grant reference: ES/L002868/1)
This is the author accepted manuscript. The final version is available from the publisher via the DOI in this record.
Advance online publication 4 January 2017