Abstract
Global media has the power to influence the ways the public engage with health services. On May 14th 2013, Angelina Jolie published an article in the New York Times magazine, outlining her decision to undergo BRCA mutation testing due to a family history of cancer; then proceed with a mastectomy. The article evoked significant interest from the media and the public. During the months that followed, the Familial Cancer Program (FCP) at Genetic Services of Western Australia (GSWA) experienced a significant increase in referrals and enquiries. Resources were overstretched and it became clear we needed to adjust work practices to manage the escalating numbers. New strategies were devised to cope with the influx of enquiries, albeit without the benefit of additional resources. We conducted an audit of referrals to the FCP made between January 2012 and December 2014. This included a comparison of the months prior to and following the New York Times article. The aim of the audit was to quantify the impact of the “Angelina Jolie effect” on referrals to the FCP. Whilst the increased awareness of the role of genetic services in risk assessment and testing for familial breast and ovarian cancer was considered positive, pre-referral risk assessment at the primary health level to evaluate the appropriateness of their patients for referral could have been helpful. Potentially, many inappropriate referrals to FCP may have been avoided with primary health evaluation thus lessening the burden on our service and preventing unnecessary worry in well women who possessed minimal family history or risk factors. It is important to understand the factors driving the uptake of risk reduction activities, particularly if engagement with a genetics service is considered part of that pathway. Continued education about cancer risk due to family history, individual features and awareness surrounding genetic testing criteria, costs and availability is required for both the public and health professionals.
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Acknowledgments
The authors would like to acknowledge their colleagues at GSWA, in particular Angela Overkov for her comments and support, the other genetic counselors working within the familial cancer program, the clinical geneticists and administration staff.
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No Funding was received by any of the authors to carry out this study.
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Rebecca Freedman, Helen Mountain, Dian Karina and Lyn Schofield declare that they have no conflict of interest to disclose.
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This was a clinical audit to elicit referral numbers. No ethics approval was required. Patient autonomy or privacy was not comprised. The authors had the permission of GSWA to present the statistics.
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This study was an audit and did not include human participants.
Statement on the Welfare of Animals
This article does not contain any studies with human participants or animals performed by any of the authors.
Informed Consent
No informed consent was required as this was an audit to elicit numbers. No patients were identified. There was no risk to patient autonomy or privacy.
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Freedman, R., Mountain, H., Karina, D. et al. A Retrospective Exploration of the Impact of the ‘Angelina Jolie Effect’ on the Single State-Wide Familial Cancer Program in Perth, Western Australia. J Genet Counsel 26, 52–62 (2017). https://doi.org/10.1007/s10897-016-9982-5
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DOI: https://doi.org/10.1007/s10897-016-9982-5