I am hesitant to do genetic testing because of the political climate in the United States. The GINA act currently still protects genetic data from being used by health insurance companies, but it never protected people from repercussions in disability insurance, long term care insurance, and life insurance decisions. I currently have LTC insurance that's not yet out of the initial period (i.e. the period in which they could cancel me.) I have a friend who was refused for her company's life insurance because of her BRCA designation. That was sobering.

In theory, there should be privacy and data protection laws protecting me. But those things are dissolving right before our eyes in many parts of American life, and I don't want to risk being caught in that.

It's not a crisis for me -- I would not choose to get a double mastectomy even if I learned I was BRCA positive (no children, way post-menopausal). If I were younger or had children I'd be singing a different tune. And I'm crazily diligent about testing, even paying out of pocket for extra diagnostic stuff. Just BRCA-curious.

Hugs and good luck to everyone going through this mess.