Abstract
Understanding challenges in familial communication of cancer risk has informed genetic service delivery. Parent-child interactions have received considerable attention, but few studies focus on young adulthood experiences within BRCA1/2 families. Young adults are approaching, or at a life stage where awareness of hereditary cancer risk is vital for informed choice of risk management options. This review assesses family communication, risk perception and cancer knowledge held by 18–40 year old individuals who have a parent with a BRCA1/2 gene mutation or carry the gene mutation themselves. Thirteen papers met the inclusion criteria. One utilized a ‘mixed methods’ methodology and the remaining used a qualitative approach. Findings were synthesized into themes and reported narratively. In general, parents are communicating openly about genetic risk with young adult offspring, but there is evidence that some young adults are withholding information from their parents about their own test results. Risk perception is influenced by a family history of cancer, childbearing plans and health providers’ advice. Misconceptions about genetic risk appear to be common and gaps in hereditary cancer knowledge are evident. It is unclear whether incorrect knowledge was passed from parents to offspring. Health providers need to provide developmentally appropriate services for emerging adults (18–25 years old), with particular support in navigating through risk management options.
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Acknowledgements
A.L.Y. is supported by the School of Psychology Margaret Stewart Fund Scholarship. J.V. is supported by the Swiss National Science Foundation (Doc.Mobility grant P1LUP3_162120). V.F.Q. is supported by Cancer Council NSW Program Grant PG16-02 with the support of the Estate of the Late Harry McPaul. C.E.W. is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501). The Behavioural Sciences Unit at the Kids Cancer Centre is proudly supported by the Kids with Cancer Foundation. We also acknowledge the contribution of Associate Professor Paul Rhodes in providing advice and comments on earlier drafts of this work.
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K.M.T. has been on the advisory board, chaired a meeting and given talks for AstraZeneca Pharmaceutical.
A.L.Y., P.N.B., J.V., V.F.Q., A.F.P., and C.E.W declare that they have no conflict of interest.
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Young, A.L., Butow, P.N., Vetsch, J. et al. Family Communication, Risk Perception and Cancer Knowledge of Young Adults from BRCA1/2 Families: a Systematic Review. J Genet Counsel 26, 1179–1196 (2017). https://doi.org/10.1007/s10897-017-0125-4
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DOI: https://doi.org/10.1007/s10897-017-0125-4