Top

Published in:

01-12-2016 | Original Research

The Impact of Angelina Jolie (AJ)’s Story on Genetic Referral and Testing at an Academic Cancer Centre in Canada

Authors: Jacques Raphael, Sunil Verma, Paul Hewitt, Andrea Eisen

Published in: Journal of Genetic Counseling | Issue 6/2016

Abstract

In May 2013, Angelina Jolie revealed to the media that she had undergone preventive double mastectomy after testing positive for a BRCA1 gene mutation. Media coverage has been extensive, but it is not clear how such a personal story affected the public and cancer genetics clinics. We conducted a retrospective review using data from the clinical database of the Familial Cancer Program at our centre. The impact of Ms. Jolie’s story on genetic counseling referrals and the appropriateness of such referrals were assessed and reported. The number of women referred for genetic counseling increased by 90 % after 6 months and remained high one year after AJ’s story with an increase of 88 % from baseline. The number of women who qualified for genetic testing increased by 105 % after 6 months; this increase persisted but was somewhat lower after one year with an increase of 68 % from baseline. Furthermore the number of BRCA1/2 carriers identified increased by 110 % after 6 months and by 42 % after one year.

The effect of Mrs. Jolie’s story persisted one year after its release; however in the latter half of the year, the hereditary cancer risk of referred women was significantly lower than initially observed. The next challenge for our health care system will not only be to meet the increased demand for cancer genetic services in our region, but also to ensure that referrals and hence use of genetic counseling resources are appropriate.

Adair, A., Hyde-Lay, R., Einsiedel, E., & Caulfield, T. (2009). Technology assessment and resource allocation for predictive genetic testing: a study of the perspectives of Canadian genetic health care providers. BMC Medical Ethics, 10, 6.CrossRefPubMedPubMedCentral

American College of Surgeons Cancer Program Standards: Ensuring Patient-Centered Care. (2016) Edition. Accessed at https://www.facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx

Antoniou, A., Pharoah, P. D., Narod, S., Risch, H. A., Eyfjord, J. E., Hopper, J. L., et al. (2003). Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case series unselected for family history: a combined analysis of 22 studies. American Journal of Human Genetics, 72(5), 1117–1130.CrossRefPubMedPubMedCentral

Borzekowski, D. L., Guan, Y., Smith, K. C., Erby, L. H., & Roter, D. L. (2013). The Angelina effect: immediate reach, grasp and impact of going public. Genetics in Medicine, 16, 516–521.CrossRefPubMed

Brown, M. L., & Potosky, A. L. (1990). The presidential effect: the public health response to media coverage about Ronald Reagan’s colon cancer episode. Public Opinion Quarterly, 54, 317–329.CrossRefPubMed

Chapman, S., McLeod, K., Wakefield, M., & Holding, S. (2005). Impact of news of celebrity illness on breast cancer screening: Kylie Minogue’s breast cancer diagnosis. The Medical Journal of Australia, 183, 247–250.PubMed

Chen, S., & Parmigiani, G. (2007). Meta-analysis of BRCA1 and BRCA2 penetrance. Journal of Clinical Oncology, 25(11), 1329–1333.CrossRefPubMedPubMedCentral

Cram, P., Fendrick, A. M., Inadomi, J., Cowen, M. E., Carpenter, D., & Vijan, S. (2003). The impact of a celebrity promotional campaign on the use of colon cancer screening: the Katie Couric effect. Archives of Internal Medicine, 163, 1601–1605.CrossRefPubMed

Dentzer, S. (2009). Communicating medical news – pitfalls of health care journalism. NEJM, 360, 1–3.CrossRefPubMed

Doheny K. Most women don’t understand their breast cancer risk: survey. http://healthyliving.msn.com/diseases/breast-cancer/most-women-dont-understand-their-breast-cancer-risk-survey. Accessed 4 September 2013.

Evans, D. G., Lalloo, F., Hopwood, P., Maurice, A., Baildam, A., Brain, A., et al. (2005). Surgical decisions made by 158 women with hereditary breast cancer aged <50 years. European Journal of Surgical Oncology, 31, 1112–1118.CrossRefPubMed

Evans, G., Barwell, J., Eccles, D., Collins, A., Izatt, L., Jacobs, C., et al. (2014). The Angelina Jolie effect: how high celebrity profile can have a major impact on provision of cancer related services. Breast Cancer Research, 16, 442.CrossRefPubMedPubMedCentral

Finch, A. P., Lubinski, J., Moller, P., et al. (2014). Impact of oophorectomy on cancer incidence and mortality in women with a BRCA1 or BRCA2 mutation. Journal of Clinical Oncology, 32, 1547–1553.CrossRefPubMedPubMedCentral

Finch, A., Wang, M., Fine, A., et al. (2015). Genetic testing for BRCA1 and BRCA2 in the province of Ontario. Clinical Genetics. doi:10.1111/cge.12647.PubMed

Gabai-Kapara, E., Lahad, A., Kaufman, B., et al. (2014). Population-based screening for breast and ovarian cancer risk due to BRCA1 and BRCA2. Proceedings of the National Academy of Sciences of the United States of America, 111, 14205–14210.CrossRefPubMedPubMedCentral

Jolie A. (2013). My medical choice. New York Times; 14 May. http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html

King, M. C., Levy-Lahad, E., & Lahad, A. (2014). Population-based screening for BRCA1 and BRCA2: 2014 Lasker award. Journal of the American Medical Association, 312(11), 1091–1092.CrossRefPubMed

Kreps, G. J. (2003). The impact of communication on cancer risk, incidence, morbidity, mortality, and quality of life. Health Communication, 15, 161–169.CrossRefPubMed

Manchanda, R., Legood, R., Burnell, M., et al. (2014). Cost-effectiveness of population screening for BRCA mutations in Ashkenazi Jewish women compared with family history-based testing. Journal of the National Cancer Institute, 107, 380.CrossRefPubMed

Metcalfe, K. A., et al. (2008). International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriers. International Journal of Cancer, 122(9), 2017–2022.CrossRefPubMedPubMedCentral

Metcalfe, K. A., Poll, A., Royer, R., et al. (2010). Screening for founder mutations in BRCA1 and BRCA2 in unselected Jewish women. Journal of Clinical Oncology, 28(3), 387–391.CrossRefPubMed

Moyer, V. A. (2014). Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: US preventive services task force recommendation statement. Annals of internal medicine., 160(4), 271–281.CrossRefPubMed

Nattinger, A. B., Hoffmann, R. G., Howell-Pelz, A., & Goodwin, J. S. (1998). Effect of Nancy Reagan’s mastectomy on choice of surgery for breast cancer by US women. JAMA, 279, 762–766.CrossRefPubMed

Niederdeppe, J. (2008). Beyond knowledge gaps: examining sociodemographic differences in response to cancer news. Human Communication Research., 34, 423–447.CrossRef

Ogata Jones, K., Denham, B. E., & Springston, J. K. (2006). Effects of mass and interpersonal communication on breast cancer screening: advancing agenda-setting theory in health contexts. Journal of Applied Communication Research, 34, 94–113.CrossRef

Parthasarathy, S. (2007). Building genetic medicine. Breast cancer, technology, and the comparative politics of health care. Cambridge, MA: MIT press.

Platt, J., Zhong, T., Moineddin, R., Booth, G. L., Easson, A. M., Fernandes, K., et al. (2015). Geographic variation immediate and delayed breast reconstruction utilization in Ontario, Canada and plastic surgeon availability: a population-based observational study. World journal of surgery., 21, 1–3.

Raphael J, Hewitt P, Graham T, Ott K, Mancuso T, Lorentz J, Emmerson M, Eisen A. (2015). Rates of prophylactic surgeries among BRCA 1 or 2 mutation carriers: A single institution experience. Abstract [P6-10-17], San Antonio Breast Cancer Symposium.

Risch, H. A., McLaughlin, J. R., Cole, D. E., Rosen, B., Bradley, L., Fan, I., et al. (2006). Population BRCA1 and BRCA2 mutation frequencies and cancer penetrances: a KIN-cohort study in Ontario, Canada. Journal of the National Cancer Institute, 98(23), 1694–1706.CrossRefPubMed

Swami, V., Taylor, R., & Carvalho, C. (2009). Acceptance of cosmetic surgery and celebrity worship: evidence of associations among female undergraduates. Pers Individ Dif, 47, 869–872.CrossRef

Vasen, H. F., Tesfay, E., Boonstra, H., Mourits, M. J., Rutgers, E., Verheyen, R., et al. (2005). Early detection of breast and ovarian cancer in families with BRCA mutations. European Journal of Cancer, 41, 549–554.CrossRefPubMed

Title: The Impact of Angelina Jolie (AJ)’s Story on Genetic Referral and Testing at an Academic Cancer Centre in Canada
Authors: Jacques Raphael
Sunil Verma
Paul Hewitt
Andrea Eisen
Publication date: 01-12-2016
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 6/2016
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-016-9973-6

At a glance: The STEP trials

Springer Medicine

The Impact of Angelina Jolie (AJ)’s Story on Genetic Referral and Testing at an Academic Cancer Centre in Canada

Abstract

At a glance: The STEP trials

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 6/2016

Family Studies for Classification of Variants of Uncertain Classification: Current Laboratory Clinical Practice and a New Web-Based Educational Tool

Understanding the Psychosocial Effects of WES Test Results on Parents of Children with Rare Diseases

DECIDE: a Decision Support Tool to Facilitate Parents’ Choices Regarding Genome-Wide Sequencing

Why Do Parents Want to Know their Child’s Carrier Status? A Qualitative Study

Prenatal Testing for Adult-Onset Conditions: the Position of the National Society of Genetic Counselors

Preimplantation Genetic Diagnosis (PGD) for Monogenic Disorders: the Value of Concurrent Aneuploidy Screening