[Sandy in Silicon Valley]

Hi, Louise and Dorinda -

The website that I provided in my earlier post discusses that some insurance carriers are paying for genetic testing these days - it was unheard of in 1997 when I was tested. That article discusses why some people choose to pay for their tests out-of-pocket, and not inform their insurance companies or doctors (the latter, at least not "on the record", to be put in one's charts).

The risk is that, if one tests positive - which I still don't think Dorinda's history indicates is likely - and the insurance carrier has that info on file, it can be held against the patient, or her offspring, as a "pre-existing condition", and coverage by an independent (non-group, non-employer-provided) carrier could be denied. This isn't a serious risk if one is already on record as diagnosed with bc or bcmets - that's already our pre-existing condition - and it'd be difficult to find any independent carrier to insure us (my costs-of-care alone approached $150K to my insurance carrier last year - we're insured through my husband's employment & group plan).

But it could be a big risk for our kids - and, if they went into business for themselves, or contracted their services out and needed to find their own insurance, they might be expected to report that their mother, or they themselves, have been tested and found positive for a BR CA mutation, especially if it's a matter of insurance company records.

That recorded information could be enough to deny our offspring insurance by an independent carrier, though Clinton got legislation passed, right before he left office in 1996, to make sure that employer-provided group insurance companies cannot discriminate against applicants on the basis of genetic testing.

I believe that once genetic testing becomes more widespread, and employer-carried group health plans more rare, independent insurers may require applicants to fill out questionnaires that ask about family history of genetic "alterations", or even ask for blood samples to test before approving an application. For now, our kids' generation faces a questionable reaction, if their family history of genetic predisposition to a very expensive-to-treat disease becomes known.

Just my personal 2c, but of course, the decision is up to the individual, and I think that talking with a genetic counselor is often helpful, if she/he is open about possible repercussions, should one's insurance provider pay for the test and get the results.

(((hugs)))
Sandy in Silicon Valley