Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review...

open access:
Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research : Genetics in Medicine : Nature Publishing Group

Abstract

Purpose:

The extent of the responsibility of health-care professionals (HCPs) to ensure that patients’ relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.

Methods:

Our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs’ responsibility to relatives with respect to disclosure.

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• Materials and Methods•
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• Author information•
• Supplementary information

 Discussion

This synthesis provides insight into perspectives on HCPs’ responsibility to patients’ relatives and HCP disclosure. HCPs generally felt responsible for relatives but perceived several obstacles to acting on this responsibility. The public and patients regarded HCP disclosure as unfavorable in approximately half the studies. In six competing and overlapping arguments, participants discussed the harms and benefits of disclosure by HCPs (summarized in Figure 2). Most arguments were drawn from HCP studies: public/patient views were underexplored. Limitations of the reviewed studies (including heterogeneity in populations and use of hypothetical scenarios) make our synthesis tentative, and its findings are in need of further consideration and research. Therefore, we turn to the wider literature to examine barriers to disclosure that HCPs might overcome and which arguments need more interrogation.