Genetic Discrimination

Everyone was talking about Angelina Jolie this week because of her bravery and insight into having a double mastectomy because genetic testing revealed she carries the genes that indicate a greater risk for breast cancer than the average woman.  Furthermore, she is considering having her ovaries removed to also limit her risk of ovarian cancer.   Because of her celebrity status everyone is talking about the benefits of genetic testing and what a great idea this is.  From my point of view, I think we better be careful what we ask for.  Submitting yourself to genetic testing carries some serious consequences today and possibly for the future.  I am talking about “genetic discrimination.” 


Genetic discrimination could currently affect your ability to get life insurance, disability insurance, critical illness or long term care insurance.  Why?  Well, applications for all life insurance and living benefits asks if you have had any “medical” tests or if you are planning on have any “medical” testing and what the results are or may be.  Currently “genetic testing” is considered a “medical test” and you must disclose the results.  Failure to disclose those results could prevent a benefit being paid out in the future.  Current insurance could not be cancelled, but future insurance may never get issued because of the results, even though you may never have actually gotten any particular cancer or disease.  Remember, it is just a statistical probability!  In addition, a large portion of cancers are not a result of genetics, anyways.


This is only one kind of “genetic discrimination” currently happening.  If for a moment we pause and think about the security of information available on line currently, and we agree that it is not particularly great, imagine a world where an employer considering two candidates for a job, both equally qualified, but one is genetically disposed to cancer, can discriminate against one candidate in favour of the other, even if the other candidate never had testing.  Is it a stretch to think that our children when considering a partner for the rest of their life choose differently because of “genetic disposition” to certain illnesses?  Is it really that farfetched?  How about adoption based on genetic testing?  Yikes!

Furthermore, I ask each and every one of you, “Are you prepared mentally to live with the results of the test?”.  How would your life change knowing you have a higher risk statistically for cancer than the average?  Remember, it is still just a chance; not a certainty.  How would the information affect your lifestyle?  Would it?  How about your retirement plans?  How about the number of children you have and/or when you have children, if at all? 


I am a cancer survivor from a family with no genetic pre-disposition to cancer in the past 3 generations of my family.  Statistically an insignificant risk, but tell that to my children who watched their dad drop from 205 lbs to 160 from 9 weeks of chemotherapy, 6 weeks of radiation treatment and a massive neck dissection. Statistics are no longer relevant when you are the statistic!

My mom always said to me growing up, “ Be careful what you wish for, you may just get it”.  I think we all need her advice.


Darren ULmer 


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