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This paper explores the views and expectations of patients concerning recontacting in clinical practice. It is based on 41 semi-structured interviews conducted in the United Kingdom. The sample comprised patients or parents of patients: without a diagnosis; recently offered a test for a condition or carrier risk; with a rare condition; with a variant of unknown significance - some of whom had been recontacted. Participants were recruited both via the National Health Service (NHS) and through online, condition-specific support groups. Most respondents viewed recontacting as desirable, however there were different opinions and expectations about what type of new information should trigger recontacting. An awareness of the potential psychological impact of receiving new information led some to suggest that recontacting should be planned, and tailored to the nature of the new information and the specific situation of patients and families. The lack of clarity about lines of responsibility for recontacting and perceptions of resource constraints in the NHS tended to mitigate respondents' favourable positions towards recontacting and their preferences. Some respondents argued that recontacting could have a preventative value and reduce the cost of healthcare. Others challenged the idea that resources should be used to implement formalised recontacting systems - via arguments that there are 'more pressing' public health priorities, and for the need for healthcare services to offer care to new patients.

Original publication

DOI

10.1038/ejhg.2017.122

Type

Journal article

Journal

European journal of human genetics : EJHG

Publication Date

10/2017

Volume

25

Pages

1106 - 1112

Addresses

Egenis, University of Exeter, Exeter, UK.

Keywords

Humans, Genetic Diseases, Inborn, Health Knowledge, Attitudes, Practice, Duty to Recontact, Physician-Patient Relations, Heterozygote, Female, Male, Surveys and Questionnaires, United Kingdom