Knowing My Genetics Is Empowerment

Knowing My Genetics Is Empowerment

Dena Weiss

Growing up with two rabbis as parents, I was not only allowed to question everything – I was encouraged to do so.

While I have applied this approach to academics, my career, relationships, and so many other facets of my life, I am most grateful for how it has made me an informed patient.

After the Affordable Care Act passed and the Myriad patent was no longer valid, my mother suggested to me and my two older sisters that we consider having genetic testing done without fear of losing insurance or paying an exorbitant cost for the test. 

For me, it was a no-brainer. I knew I was at risk of being a BRCA carrier, but a genetic test could tell me definitively if it was something I needed to worry about or not. 

When I received the letter affirming my BRCA-2 mutation, I was 23. I was living on my own in a new city where I had no family and no care team. 

At the recommendation of my mother, one of my first calls was to Sharsheret. I was immediately sent a packet on genetics and connected with a young woman from the peer support network. 

Upon reviewing the materials and speaking to my peer, however, it became apparent how far there was to go: I already knew the numbers and the studies from which they came; I understood the factors that affected my cancer risk. While my peer was also in her 20s, we did not have much else in common.

Over the years, I have found great doctors and oncologists. I have moved cities, earned a graduate degree, found a supportive partner, and never stopped seeking out more information.

I was incredibly heartened to learn that in that time, the Sharsheret peer network has grown to include previvors and survivors of all ages, in all stages of life. 

Upon discussing my mutation, people will often pity me or ask if I am scared. To me, knowing my genetics is empowerment. The more I understand about the risks I face, the more informed I can be in the decisions I make for myself and my future. What more could I ask for?