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Research In Action 2022

Photo Research in Action Tarsha Jones , Ph.D.

Disparities in Breast Cancer and Genetic Testing Among Young Breast Cancer Survivors

Tarsha Jones , Ph.D.
Assistant Professor
Christine E. Lynn College of Nursing

Are there disadvantages to genetic testing?   

There are benefits and risks (disadvantages) of completing genetic testing. While the disadvantages of genetic testing are minimal, completing testing is a very personal decision. I recommend that you discuss the pros and cons of genetic testing with a genetic counselor or your trusted healthcare provider and decide if genetic testing is right for you. One disadvantage is the psychological impact of knowing your genetic test result, which may be a positive pathogenic mutation or variant. You can read more about the disadvantages of testing from a reputable website: National Cancer Institute: https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet#what-arenbspthe-possible-harms-of-genetic-testing-for-brca1-and-brca2-variants

Are there support groups specifically for the underserved population who have tested positive for a BRCA mutation?   

FORCE (Facing Hereditary Cancer Empowered) organization offers Previvors (people who are at high-risk for cancer due to an inherited mutation but have not yet been diagnosed with cancer) or Survivors Community Support Groups. You can access their website here: https://www.facingourrisk.org/support/calendar

If I test positive, what can I do to lower my risk of breast cancer?   

There are several options to reduce your risk of developing cancer, they include: (a) risk-reducing surgeries (e.g., prophylactic mastectomy); (b) chemoprevention (e.g., Tamoxifen); (c) enhanced screening (e.g., Mammography and MRI); and (d) lifestyle changes. The National Cancer Institute (NCI) offers an excellent reputable resource page that can be accessed here: https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

My question is: Since we know genetic testing is expensive sometimes it is not covered by insurance. I am checking if there are any resources out there that help women defray the cost of genetic testing?   

If your insurance does not cover genetic testing or if you are uninsured, there are some genetic testing companies such as Myriad Genetics Financial Assistance Program or Ambry Genetics (among others) that offer genetic testing at low-cost or no cost through their financial assistance programs. Please consult a certified genetic counselor or your health care provider to discuss options for paying for genetic testing. One example of a financial assistance program can be found here: https://myriad.com/about-myriad/myriad-cares/financial-assistance-program/

Hi Tarsha, I am a Business Major but I am happy that I attended this webinar out of curiosity. I have a friend who has breast cancer. I would like to be empowered with knowledge on Breast Cancer. How can I get involve in your research please? You did a phenomenal job on this topic of breast cancer and breast cancer survivors. Good information. Thanks so much.   

Thank you for your interest in this very important research project that is sponsored by NIH- National Cancer Institute. Please feel free to send me an email indicating how you envision yourself contributing to this research and I am happy to review and get back to you. I can be reached by email at: Jonest@health.fau.edu