Experience of Asian males communicating cardiac genetic risk within the family
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.
KeywordsGenetic counseling Inherited cardiac conditions Family communication Genetic risk information Singapore Asia
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.
- Charron P, Arad M, Arbustini E, Basso C, Bilinska Z, Elliott P, Helio T, Keren A, McKenna WJ, Monserrat L, Pankuweit S, Perrot A, Rapezzi C, Ristic A, Seggewiss H, van Langen I, Tavazzi L, European Society of Cardiology Working Group on Myocardial and Pericardial Diseases (2010) Genetic counselling and testing in cardiomyopathies: a position statement of the European society of cardiology working group on myocardial and pericardial diseases. Eur Heart J 31(22):2715–2726. https://doi.org/10.1093/eurheartj/ehq271PubMedCrossRefGoogle Scholar
- Chen W-T (2009) Predictors of breast examination practices of Chinese immigrants. Cancer Nurs 32(1):64–72. https://doi.org/10.1097/01.NCC.0000343366.21495.c1PubMedPubMedCentralCrossRefGoogle Scholar
- Cirino AL, Ho CY (2014) Hypertrophic cardiomyopathy overview. University of Washington, SeattleGoogle Scholar
- Elliott PM, Lambiase PD, Kumar D (2011) Inherited cardiac disease. Oxford University Press, New York. https://doi.org/10.1093/med/9780199559688.001.0001CrossRefGoogle Scholar
- Gaff CL, Clarke AJ, Atkinson P, Sivell S, Elwyn G, Iredale R, Thornton H, Dundon J, Shaw C, Edwards A (2007) Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet 15(10):999–1011. https://doi.org/10.1038/sj.ejhg.5201883PubMedCrossRefGoogle Scholar
- Hershberger RE, Morales A (2015) Dilated cardiomyopathy overview. University of Washington, SeattleGoogle Scholar
- Juwita S, Norwati D, Harmy M, T Alina T, Siti Hawa A (2013) Barriers to cardiovascular screening among Malay women in East Coast Malaysia. Int J Collab Res Intern Med Public Health 5:67–78Google Scholar
- Liamputtong P (2013) Qualitative research methods, 4th edn. Oxford University Press, South MelbourneGoogle Scholar
- McCarthy Veach P, Bartels DM, LeRoy B (2003) Facilitating the genetic counseling process: a practice manual. Springer, New YorkGoogle Scholar
- Morris B (2014) The impact of culture & ethnicity on the counseling process: perspectives of genetic counselors from minority ethnic groups. University of South Carolina, ColumbiaGoogle Scholar
- Seymour KC, Addington-Hall J, Lucassen AM, Foster CL (2010) What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. J Genet Couns 19(4):330–342. https://doi.org/10.1007/s10897-010-9296-yCrossRefGoogle Scholar
- Singapore Department of Statistics (2016) Latest key indicators. http://www.singstat.gov.sg/
- Wang J (2014) Singaporean women’s perceptions and barriers to breast and cervical cancer screening. Duke University, DurhamGoogle Scholar
- Wong L, Wong Y, Low W, Khoo E, Shuib R (2009) Knowledge and awareness of cervical cancer and screening among Malaysian women who have never had a Pap smear: a qualitative study. Singap Med J 50:49–53Google Scholar