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Reply to "Genetic disorder in your family? How to handle disclosure, etc?"
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[quote=Anonymous]I will be undergoing genetic testing for a suspected genetic disorder that I have all the signs of. It's statistically pretty likely I have the mutation based on initial testing and symptoms. Reading about it it's also likely I inherited it from my mother. If I have the mutation I have a higher risk of a particular cancer (not breast) and I hope that my insurance will cover yearly screening. I admit I didn't really think through all the implications for having a genetic disorder "on your record" and even if I did I'd probably have gone forward with genetic testing as the cancer risk increases as you age. I'm very lucky to have good insurance through my employer and with government service I will be able to carry it into retirement. My concerns/questions are: 1) if you had something like this in your family how did you tell them? My family is pretty low drama so I'm not hugely worried, but my parents should know as should my brother for his own sake and b/c he has two children. He is the type that will definitely be vigilant so I wouldn't tell his wife directly, but wouldn't hide it. 2) for your own kids, would you seek to have them genetically tested under the age of 18? It's highly unlikely they will develop symptoms while they are young and even more unlikely that they would be at higher risk for the cancer mentioned above until they were older. This is definitely the type of thing that could have been an issue prior to the ACA protection for pre-existing conditions, and is still something that could be an issue in getting life insurance. This isn't me just spitballing or freaking out. It's listed as something to keep in mind if you decide to have your children tested on the website for the organization dedicated to the disorder. I am probably getting a little ahead of myself, but it all kind of hit home as I'm working with insurance to set up genetic counseling.[/quote]
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