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Insurance and genetic testing? Consider oophorectomy?


Ask-the-Expert Online Conference


Question from DDF: I had a stage 0 DCIS cancer 2 years ago at age 53. I have a family history of breast cancer, post menopause. My mother's genetic testing was negative. My daughter is 22. Should she or I be tested and when? I am concerned about insurance coverage issues in the future in conjunction with genetic testing. Also, should I consider an oophorectomy? I hear pros and cons.
Answers - Carol Cherry, M.S.N., R.N., A.P.R.N., B.C. It would be important to look at your father's side of the family for any history of cancer. That may make it a reasonable choice for you to have genetic testing because you could have inherited an altered gene from your dad's side.
Terri McHugh The federal government enacted a law in 2003 for discrimination against genetic testing for group health insurance plans.
Carol Cherry, M.S.N., R.N., A.P.R.N., B.C. Currently at the federal level, through the HIPAA laws, people who are part of a group health insurance plan cannot be discriminated against on the basis of genetic information. If you do not have a group plan, but have personal insurance, then the HIPAA law does not cover you. However, it's important to know that much more comprehensive anti-discrimination legislation is currently in front of Congress with a lot of momentum behind it for passage. Many advocacy groups are working diligently to move that legislation along. Despite the fact we don't have fully comprehensive protection against discrimination, our experience is that we're not seeing people being discriminated against. That's the good news. There are no laws that protect you against discrimination for life insurance plans, although we're not seeing discrimination in that area either.
Terri McHugh Often with life insurance plans, your own family history of cancer may impact those premiums. In regards to the oophorectomy, the family history is important on both your mother's and father's side to see what other cancers may be present in the family, such as ovarian or reported cancer in the abdomen of unknown source. In the absence of any family history of ovarian cancer, and in a family that has only a presence of breast cancer, several small studies have shown the risk of ovarian cancer is not any greater than that of the general population in these women. Noah Kauff is the author of one such study, appearing in the Journal of the National Cancer Institute, September 2005.
Carol Cherry, M.S.N., R.N., A.P.R.N., B.C. We have a book that may help in the decision making of oophorectomy from the Fox Chase Cancer Center. If you send an email to surgerybook@fccc.edu and request the book, we'd be happy to send it out to you. It was designed to assist women in thinking through all of the information that should be considered regarding pros and cons of elective ovary removal. I think it might be helpful for you.

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