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Evidence-Based Oncology August 2019

Genetic Testing Can Reduce Suffering and Save Lives

Lauren Corduck
The founder of Oneinforty discusses the importance of identifying populations at high risk of hereditary cancers, as well as the need for education, testing, and other steps to prevent cancer. 
There is clearly a gross inequality here: Patients with Ashkenazi Jewish ancestry are at least 10 times more likely than members of the general population to be BRCA positive. Oneinforty is illuminating a related and glaring healthcare inequity—namely, it is not standard of care to identify members of this high-risk population; inform them of their risk; educate them about managing their risk; and offer them ready, affordable access to emotional support, genetic counseling, and BRCA screening.

Oneinforty advocates for all families in which a BRCA gene mutation is lurking. We are Oneinforty, and we need the US healthcare system to meet us where we are: largely uninformed, underserved, grief-stricken, and anxious to face our high risk of having hereditary cancer syndrome. We should routinely be given the opportunity to find out our BRCA status before cancer strikes. From personal experience, I know that—as scary as the risk of having a BRCA gene mutation may feel—hearing the words “You have cancer” is far more devastating and life altering. 

References

1. Fackenthal JD, Olopade OI. Breast cancer risk associated with BRCA1 and BRCA2 in diverse populations. Nat Rev Cancer. 2007;7(12):937-948. doi: 10.1038/nrc2054.
2. What are my risks? Ovarian Cancer Action website. ovarian.org.uk/ovarian-cancer/brca/i-have-a-genetic-mutation/what-are-my-risks/. Accessed July 9, 2019.
3. Robles-díaz L, Goldfrank DJ, Kauff ND, Robson M, Offit K. Hereditary ovarian cancer in Ashkenazi Jews. Fam Cancer. 2004;3(3-4):259-265. doi: 10.1007/s10689-004-9552-0.
4. BRCA awareness, education and support. Oneinforty website. oneinforty.org/. Accessed July 9, 2019.
5. Gabai-Kapara E, Lahad A, Kaufman B, et al. Population-based screening for breast and ovarian cancer risk due to BRCA1 and BRCA2. Proc Natl Acad Sci USA. 2014;111(39):14205-14210. doi:10.1073/pnas.1415979111.
6. Manchanda R, Jacobs I. Genetic screening for gynecological cancer: where are we heading? Future Oncol. 2016;12(2):207-220. doi: 10.2217/fon.15.278.
7. Manchanda R, Patel S, Antoniou AC, et al. Cost-effectiveness of population based BRCA testing with varying Ashkenazi Jewish ancestry. Am J Obstet Gynecol. 2017;217(5):578.e1-578.e12. doi: 10.1016/j.ajog.2017.06.038.
8. Lieberman S, Lahad A, Tomer A, Cohen C, Levy-Lahad E, Raz A. Population screening for BRCA1/BRCA2 mutations: lessons from qualitative analysis of the screening experience. Genet Med. 2017; 19(6):628-634. doi:10.1038/gim.2016.175.9.
9. Lieberman S. Tomer A, Ben-Chetrit A, et al. Population-screening for BRCA1/BRCA2 founder mutations in Ashkenazi Jews: proactive recruitment compared with self-referral. Genet Med. 2017;19(7):754-762. doi: 10.1038/gim.2016.182
10. What’s the difference between equity and equality? Milken Institute of Public Health website. publichealthonline.gwu.edu/blog/equity-vs-equality/. Published April 5, 2018. Accessed July 15, 2019.
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