This October, and every day, we urge legislative action to expand protections against genetic discrimination.

Every year, millions of women are diagnosed with breast and reproductive cancers, making it one of the most common cancers in women worldwide. Women with BRCA mutations face up to an 80% lifetime risk of developing breast cancer—an aggressive, fast-growing type that often appears in younger women. For women who know their genetic mutation status, and their daughters, preventative measures can be taken, including earlier and more frequent screening, MRI surveillance instead of mammograms,  preventative surgeries, and the opportunity to have agency over healthcare choices. 

Unaware of any family history of reproductive cancers until just a few years ago, I recently discovered that I am a carrier of the BRCA genetic mutation. My daughters carry the weight of knowing their increased risk of developing breast or ovarian cancer every day. They are eager to take preventative measures and make informed decisions about their health, but they are hesitant about the limitations this may have on them and their families in the future. 

While the Genetic Information Nondiscrimination Act (GINA, 2008), provides basic safeguards against genetic discrimination at the Federal level, it stops short. It does not cover life, disability, or long-term care insurance. Patients with a genetic mutation may be charged higher premiums or denied coverage entirely. While the recommendation is often to purchase coverage before genetic testing, this becomes a more complicated catch-22 for people with disabilities- some of these policies could be considered an asset and put their Social Security Insurance (SSI) benefits at risk. This loophole creates a dangerous disincentive to pursue testing or coverage and punishes an already vulnerable population. 

We must expand anti-discrimination protections to all types of insurance. Nobody should be penalized for genetic testing or the pursuit of preventative health care measures. We know early detection saves lives. Help us today to end genetic discrimination now.