2:10 - 2:30 pmSunday, September 7
Plenary Hall
Making big decisions with my genetic data, and my BRCA community
Plenary Hall
Making big decisions with my genetic data, and my BRCA community
Founder, Brave Bosom
Many people have never heard the term 'Previvor.'  But for women who carry genetic mutations associated with a high risk of breast and ovarian cancer, it's an empowering word that represents an emerging... Read more

Description

Many people have never heard the term 'Previvor.'  But for women who carry genetic mutations associated with a high risk of breast and ovarian cancer, it's an empowering word that represents an emerging shared identity.  

Often, when patients are tested for genetic mutations they feel alone as they are left to make decisions about their futures.  I am no exception.  It wasn't until I found an online community of fellow BRCA mutation carriers that I truly felt empowered to make decisions about my future.  Not only did I have a new-found support system, I had a place to learn about experiences of other women who had chosen prophylactic surgery and to compare my decisions with real-world experience.  Today, I co-moderate two fast growing communities of high risk women called Young Previvors and BRCA Sisterhood.  Together these groups represent over 3000 women.

We are a different kind of ePatient community.  We represent women who are making decisions based on genetic information rather than a cancer diagnosis.  We hope to change our futures, and to advocate for smarter ways to screen for, treat, and prevent cancer.  As an online patient community, we support each other as we seek to navigate decisions about surveillance, prophylactic surgeries, and the life-long path we're on as young women who carry a high risk of breast and ovarian cancer. We find that our shared knowledge is a powerful tool, and we take pride in our strength as a community of patients who are making informed decisions based on our genetic information.  

Andrea Downing is a BRCActivist. When she was 25 years old, she discovered that she has up to an 87% lifetime risk of having breast cancer and up to a 60% lifetime risk of ovarian cancer when she tested positive for a BRCA1 deleterious gene mutation. This mutation was passed from her great grandmother to her grandmother to her mother and now to Andrea. Her great grandmother and grandmother died because of this mutation, and her mother was diagnosed with Stage 3 Cancer in her early thirties.

This has been an exciting and turbulent year in the world of BRCA. In April, Andrea stood at the steps of the Supreme Court to tell her story as oral arguments were heard in Association of Molecular Pathology v. Myriad Genetics. This case made history when the right to patent human DNA was overturned 9-0 by the Supreme Court. Now she serves on the steering committee of a project called Free The Data.

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