Mapping Fate: A Memoir Of Family, Risk, And Genetic Research

1142 words - 5 pages

In today’s modern society, there are over 10,000 diseases that are said to be monogenic, meaning that only one gene is involved in the disease ("Genes and Human Disease"). Many of these diseases are incurable and can prove to be terminal, one of which is Huntington’s disease. Not only is this disease physically detrimental to the well-being of the individual, it can also affect other loved ones such as offspring. An example of such issues is exemplified in Alice Wexler’s memoir Mapping Fate: A Memoir of Family, Risk, and Genetic Research, where she describes the struggles and challenges her and her family must face as her mother is diagnosed with Huntington’s disease.
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Huntington’s disease is an autosomal dominant disorder, meaning that both genders are affected, it does not skip generations, and either parent can pass it down if affected ("Genes and Human Disease"). The gene for Huntington’s disease is fatal, and if passed down, the offspring will develop the disease at some point in their life ("Genes and Human Disease"). This means that if one parent is affected, which in this case happens to be Alice and Nancy’s mother, there is a 50% chance that each of them will acquire the fatal gene. Alice also learns that her mother’s father and her three uncles passed away due to Huntington’s. This heritable nature of Huntington’s causes many ethical issues for Alice, which will be discussed next.
Since Alice is not thoroughly involved with the work of her sister and father, she spends the majority of the book expressing her concern with various ethical issues that come to mind. As mentioned earlier, Alice’s primary concern is whether or not she and her sister are diagnosed with Huntington’s. Since her grandfather and mother both had the disease, she must consider the fact that the more the disease is passed down, the more likely it is that it will be expressed at a younger age ("Genes and Human Disease"). As a result, she must keep in mind that if she does turn out to have the disease, not only will her offspring have a 50% chance of being diagnosed with disease, but they also have the possibility of expressing the symptoms at a younger age. In addition, she has the unfortunate experience of watching her mother slowly suffer, and in a way, deteriorate all the way until death. Alice first has to face the decision of getting tested for Huntington’s or not if and when her father and sister determine the gene responsible. She contemplates that if she gets tested, it would help her decision to have a child or not, while at the same time, give her a negative outlook on life if she does turn out to be affected. Alice spends a lot of time considering whether or not to get tested but ultimately in the end, she decides not to get tested and leave the medical ambiguity still present in her life. Another issue that she thinks about is the feeling of guilt if one of the...

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