A persuasive essay by Kaitlyn Neuman.
We are taught in school to be accepting of everyone, regardless of their skin tone, their weight, their gender, or whether they have freckles or glasses. We are taught to treat them fairly; no different from anybody else. These traits are caused by tiny things we call our genes. Genes are our programmers; they determine everything about us, but we have no control over any of them. We assume that the man having difficulty walking down the street is either drunk or high, rather than affected by a neurodegenerative disease. So, if we are taught to treat a girl with brown hair, glasses, and wide hips the same as a girl who is pretty, skinny, and blonde; then why should it be acceptable to discriminate against someone with a disability?
As stated by the Canadian Coalition for Genetic Fairness (CCGF) established by the Huntington Society of Canada (HSC), “Canada is the only G7 country that does not have protection over the use of its citizens’ genetic information” (HSC, 2013). Scientists are rocketing ahead with learning about the genetic basis of many diseases and their possible treatments. This leaves Canadians wide open to being preyed upon by employers and insurers who are not prevented from accessing such personal information and family histories (Gostin, 1991). In a recent study called Beyond the Patient: The Broader Impact of Genetic Discrimination among Individuals at Risk of Huntington Disease, 293 people were surveyed by the University of British Columbia. 86% of people surveyed admitted to fearing discrimination; this fear impacts the person’s behaviours, and sometimes even results in mental and physical suffering. However, this is just the potential. 49.7% of people actually encounters genetic discrimination (Bombard et al., 2011).
If someone with glasses goes to an insurance company to apply for health and life insurance, they will not be turned down on the basis of poor eyesight. The insurance company does not assume that the person will someday go blind and walk off a cliff. So, why should someone like myself be denied support as simple as life insurance because there is a well-calculated possibility, based on my genetics, that I could become too costly? Like the toss of a coin, I may or may not be diagnosed with Huntington disease, a devastating neurodegenerative genetic disorder, thirty or forty years down the road. Why is the insurance company allowed to outright ask about such personal information about their potential clients?
My sister tried to find an insurance company that will provide her with life insurance. The screening process involved a seemingly never-ending session of seriously invasive questions. They bluntly asked about many different diseases, if she had heard of them, if they affected family members, and how, and if she was at risk of inheriting any of them. After several months of additional applications and reviews from various insurance companies, she exhausted her search. In another recent study titled Perceptions of Genetic Discrimination among People at Risk for Huntington’s Disease: a Cross Sectional Survey, 167 people were surveyed by the University of British Columbia. 29.2% reported being discriminated against in insurance dealings (Bombard et al., 2009). Insurance brokers personally have nothing against people like me, so I cannot be upset with them. The reason these wealthy companies deny us insurance is strictly based on economics. It is simple really. They may grant us insurance, but if we get sick and die midlife, it costs them money. Our disease is both debilitating and predictable. We know that if we lose the coin toss, ten to twenty years after the onset of symptoms, our time could be up any day. “Normal” people get insurance because only God knows when they are going to die.
Will I find love? Will I have children? These are key questions that for most teens and young adults the answer is obvious, “well duh! Of course”. However 12.4% of the people from the UBC study experienced discrimination while attempting to establish a relationship and 15.5% reported discrimination concerning family planning and child rearing (Bombard et al., 2009). As a child, I lived in a fantasy world believing that someday I would find a sweetheart, get married, become a princess, and live happily ever after as the saying goes. The harsh truth hit me sometime around the age of ten, when I asked my grade five teacher to sponsor me for the annual “Walk to Cure Huntington Disease”. At the time, I had no idea about the implications of the disease apart from the fact that it affects my family. I knew that my dad did crazy stuff that my friend’s fathers did not. So when my teacher said, “Oh, that disease is genetic.” I cried all the way home. I was a ten year old child who was just told her fate by a teacher. My dreams of being a princess crashed down around me. All of the things little girls like me fantasized about, may never come true. Who would want to fall in love with another person who has a tag affixed to them, warning– Hey! I’m looking for love, but my expected life span is only about fifty. I will cause you a great deal of pain and consume all of your savings. Don’t over think this, I do have great eyes! People run. It’s a red flag with a buzzer shrieking: STAY AWAY.
If you are lucky enough to find a special someone to accept the fact that you may or may not inherit this neurodegenerative disease, good luck with family planning (Myers, R. H., 2004). You can choose to conceive the natural way, but this carries a high risk of passing the mutated Huntingtin gene on to your child. Adoption? Out of the question, since you may inherit this debilitating disease and fall short of your obligations as a parent. You have an option to take the high tech route in selecting an egg or sperm without the gene, but you have to be nearly wealthy to undergo such treatments and the success rate is relatively low. No matter the choice anyone makes about raising a child in an Huntington family, people will scrutinize them—just because they can.
Teachers burn into our heads the importance of succeeding and being happy in our chosen careers. School prepares you for attaining a profession that will support you in life. Counsellors, who people like myself talk to, tell us, “All you can do for now is to live in the moment and live your life to the fullest”. Well, my question is this: How in the world are we supposed to accomplish this while going to school for six hours a day and tending to chores, hours of homework, extracurricular activities, and an ill family member all evening? You can forget this lofty notion entirely if you have a job on top of these obligations. Should people who face an imminent fate with doom’s early surprise waste thousands of dollars and years of precious time by attending college or university? When people like me consider our career options, the situation gets murkier. 6.9% of persons surveyed by the UBC study reported discrimination in employment; that is, if they were lucky enough to get a job (Bombard et al., 2009). Companies cannot afford to invest in skilled employees at risk for Huntington disease. There is a high cost associated with paying out long term disability benefits to Huntington’s sufferers who are no longer able to carry out meaningful work in the prime of life.
As someone at risk for developing Huntington disease, why can I not look to my future like my peers and see rainbows and daisies, a cozy mansion with two children, four dogs, and a loving husband? I should have equal opportunity to look down at my clothes and see work clothes, knowing that it is my choice to work every day in the vocation I chose. I should have every right to a financial safety net in stepping out the door and into the great outdoors because I have insurance. When I look to my left and I look to my right, I know the teens beside me have few barriers to prevent them from achieving their dreams. Why shouldn’t I? People at risk for a genetic disease deserve a fair chance. Is that too much to ask?
Bombard, Y., Palin, J., Friedman, J., Veenstra, G., Creighton, S., Bottorff, J., & Hayden,
M. (2011). Beyond the patient: The broader impact of genetic discrimination among individuals at risk of Huntington disease. Am. J. Med. Genet. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 217-226.
Bombard Y., Veenstra G., Friedman J., Creighton S., Currie L., Paulsen J. et al. (2009). Perceptions of genetic discrimination among people at risk for Huntington’s disease: a cross sectional survey. BMJ. 338:b2175
Myers, R. H. (2004). Huntington’s Disease Genetics. NeuroRx, 1(2), 255–262.
Gostin, L. (1991, January 1). Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers. Retreived January 9th, 2015, from http://scholarship.law.georgetown.edu/cgi/viewcontent.cgi?article=1763&context=facpub&sei-redir=1&referer=http://www.google.ca/search?client=safari&rls=en&q=adoption+and+genetic+discrimination&ie=UTF-8&oe=UTF-8&gfe_rd%3
What is Genetic Discrimination? (2013). Retrieved January 7th, 2015, from https://www.huntingtonsociety.ca/what-is-genetic-discrimination/#sthash.z88KhX0T.dpuf