Thursday, July 26, 2012

Crystal ball of DNA

Yesterday was my appointment with the genetics counselor.  I want to start by saying Darin was right, he said they would be like a car salesmen pushing to make a sale.  My appointment was at 10:00 a.m. and I don't normally take Brendyn with me to the doctor but I figured he would be ok at this appointment.  We had a good talk on the way there about DNA and how not only a persons DNA effects what health conditions they can have but also a persons lifestyle has an influence.  Unlike all the other waiting rooms at the VA this one did have a large table with a puzzles to work on while you wait.  I wonder how many patients have finished a puzzle while waiting.  Or worse get to the last piece of the puzzle and it's missing. 

First I will explain why I have this appointment.  Mutation of BRCA1 and BRCA2 genes has been linked to hereditary breast and ovarian cancer.  They are genes that belong to a class of genes known as tumor suppressors.

A woman's risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious (harmful) BRCA1 or BRCA2 mutation.  Both men and women who have harmful BRCA1 or BRCA2 mutations may be at increased risk of other cancers.

Genetic tests are available to check for BRCA1 and BRCA2 mutations.  A blood sample is required for these tests, and genetic counseling is recommended before and after the tests. 

As usual I had already prepared for this appointment by making a family tree online with everyone's date of birth, date of death and cause of death.  I must say she was impressed with my family tree.  The bad part is she didn't tell me anything I hadn't already figure out from my own research.  This is when she turned in to the blood sucking saleswoman. 


Genetic testing tells you if you are positive for a genetic mutation, HOWEVER it is not a given that you will develop breast cancer: the risk ranges from 65-80 percent.  There are women with significant family history of breast cancer who test negative, but this doesn't guarantee they will not develop breast cancer.  Only 7-10 percent of women with breast cancer have the mutation.  As she tells me all of this I look down at my family tree and count the number of women with breast cancer on both sides of my family...5 out 7 women.  Do I really need a blood test to tell me I have a significant family history of breast cancer.  I don't think so.  But the good doctor presses on...if I could get just one of my two aunts on my dad's side to also test, I could be helping future generations know their risk of breast cancer.  Once again I look down at my family tree and say no, I think I already know they have a risk.  Ok, so the VA is willing to cover the cost of my test.  Not bad considering the test cost about $3000.00.  But the good doctor was still pressing on for the testing.  She then suggest that since the VA will cover the cost of my test, I could then cover the cost of the test for one of my aunts.  And with out skipping a beat she says but that doesn't guarantee that her health/life insurance wouldn't be effected by the test results.  A-ha there it was, the long awaited words I had been waiting to hear.  How would this effect health/life insurance. 

I won't go into all the details here but the Genetic Information Non-Discrimination Act (GINA) prohibits the utilization of genetic information to mistreat Americans based on their DNA.  But...provisions prohibiting discrimination in health coverage based on genetic information do not extend to life insurance, disability insurance, or long-term care insurance.  For example, GINA does not make it illegal for a life insurance company to discriminate based on genetic information.  In addition, GINA's provisions prohibiting discrimination by employers based on genetic information generally do not apply to employers with fewer than 15 employees.  For health coverage provided by a health insurer to individuals, GINA does not prohibit the health insurer from determining eligibility or premium rates for an individual based on the manifestation of a disease or disorder in that individual.  GINA also does not prohibit health insurers or health plan administrators from obtaining and using genetic test results in making payment determinations. 

With all that being said, I won't be having the test done.  I said thanks, but no thanks.  My family tree already tells me everything I need to know.

My next appointment is Friday July 27th at 10:40 a.m. with the plastic surgeon. 

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