When to Break the News and Whose Responsibility Is It? A Cross-Sectional Qualitative Study of Health Professionals' Views Regarding Disclosure of BRCA Genetic Cancer Risk

Alison Luk Young 1 2, Phyllis N Butow 3, Katherine M Tucker 4 5, Claire E Wakefield 2 6, Emma Healey 7, Rachel Williams 4 5

Affiliations

PMID: 32102811
DOI: 10.1136/bmjopen-2019-033127

Abstract

Objectives: Disclosure of a hereditary condition in the family poses notable challenges for patients who often seek the assistance of genetic health professionals (GHPs). This study aimed to investigate GHPs' opinions about the ideal time for disclosure to offspring and their responsibility to at-risk relatives.

Design: Cross-sectional qualitative study.

Setting: Genetic familial cancer clinics related to mostly secondary and tertiary care hospitals and centres in urban, regional and rural areas across all states of Australia.

Participants: GHPs (N=73) including clinical geneticists, genetic counsellors, medical specialists, nurses, surgeons and mental health specialists (eg, psychiatrists, psychologists) who had worked with BRCA1 and BRCA2 families for an average of 9 years.

Results: Focus groups and interviews were transcribed and analysed thematically. GHPs perceived that life stage, maturity, parents' knowledge and capacity to disseminate information influenced parent-offspring disclosure. In general, GHPs recommended early informal conversations with offspring about a family illness. GHPs considered that facilitation of disclosure to relatives using counselling strategies was their responsibility, yet there were limitations to their role (eg, legal and resource constraints). Variability exists in the extent to which genetic clinics overcome challenges to disclosure.

Conclusions: GHPs' views on the ideal time for the disclosure of genetic risk are generally dependent on the patient's age and relative's ability to disclose information. A responsibility towards the patient and their at-risk relative was widely accepted as a role of a GHP but views vary depending on legislative and specialty differences. Greater uniformity is needed in genetic procedural guidelines and the role of each discipline (eg, geneticists, genetic counsellors, oncologists, nurses and mental health specialists) in genetic clinics to manage disclosure challenges.

Keywords: disclosure; duty to warn; ethical issues; genetic privacy; genetic testing; genetics.