Experience of Asian males communicating cardiac genetic risk within the family

  • Sylvia Kam
  • Yasmin Bylstra
  • Laura Forrest
  • Ivan Macciocca
  • Roger Foo
Original Article

Abstract

The genetic nature of an inherited cardiac condition (ICC) places first- and second-degree relatives at risk of cardiac complications and sudden death, even in the absence of symptoms. Communication of cardiac genetic risk information allows at-risk relatives to clarify, manage, and potentially prevent ICC-associated risks through cardiac screening. Literature regarding family communication of genetic risk information are predominantly based on Western populations, with limited insight into the Asian experience. This qualitative exploratory study provides a male perspective into the communication of ICC risks within families in Singapore. Eight male participants with clinically diagnosed cardiomyopathy, who had all received genetic counseling, were recruited. A phenomenological perspective was used to identify emergent themes from semi-structured interviews. In this study, most participants recalled their healthcare professional’s emphasis on family communication. Notably, participants revealed that at-risk relatives were not accessing screening, and many described family members as currently asymptomatic and “healthy.” These findings coincide with documented Asian beliefs regarding perceptions of health, which have important implications for the provision of genetic counseling support within Asian communities, especially in facilitating family communication such that at-risk relatives are informed about their ICC risks and available management options.

Keywords

Genetic counseling Inherited cardiac conditions Family communication Genetic risk information Singapore Asia 

Notes

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Research involving human participants and/or animals

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

This article does not contain any studies with animals performed by any of the authors.

Supplementary material

12687_2017_352_MOESM1_ESM.pdf (50 kb)
ESM 1 (PDF 50kb)

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.POLARIS @ SingHealth, Singapore Health ServicesSingaporeSingapore
  2. 2.Department of PaediatricsThe University of MelbourneParkvilleAustralia
  3. 3.SingHealth Duke-NUS Institute of Precision MedicineSingaporeSingapore
  4. 4.Inherited Cardiac Conditions ClinicNational University Heart Centre SingaporeSingaporeSingapore
  5. 5.Peter MacCallum Cancer Centre, Victorian Comprehensive Cancer CentreMelbourneAustralia
  6. 6.Victorian Clinical Genetics ServicesMurdoch Childrens Research InstituteParkvilleAustralia
  7. 7.Cardiovascular Research InstituteNational University Health SystemSingaporeSingapore
  8. 8.Department of CardiologyNational University Heart Centre SingaporeSingaporeSingapore
  9. 9.Centre for Translational Medicine, Yong Loo Lin School of MedicineNational University of SingaporeSingaporeSingapore

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