The Observer, December 7, 2007
Volume XL, Issue 13
Medicine Today: Testing for disease can change lives
Huntington's Disease is a neurological disorder inherited in an autosomal dominant pattern such that there is a one-in-two chance each child of an affected parent will get the disease. Symptoms are progressive and begin with uncontrolled body movements, decline of coordination, and personality changes. The disease is physically and neurologically crippling, and eventually fatal.
Testing for Huntington's is particularly complicated from a bioethical perspective because of two very distinct differences when compared to genetic testing for many other diseases: Huntington's is late-onset (most commonly in the late 40s/early 50s) and the test does not reveal a predisposition but rather a certainty.
The decision to get tested is difficult because the knowledge cannot be unlearned. For those who say they would not change the way they live if they were going to get the disease, it seems a daunting challenge to carry out such a philosophy knowing without any doubt that a fatal disease is on its way.
Individuals weighing the option of testing need to consider many things – or choose explicitly not to consider them. What impact will the knowledge of having the disease have on how you live life? Is that a good impact or a bad impact? Would it be possible to enjoy life not knowing? Would it be possible to enjoy life knowing for sure? Would one be more enjoyable than the other?
Aside from the desire to be without uncertainty, many people who choose to get tested do so for the purposes of making decisions about family. Certainly not all, but many who test positive for the Huntington's allele choose not to get married or have children to avoid the inevitable loss and hurt the disease will bring to loved ones.
Some who possess the allele do go on to begin families. Because Huntington's arrives late compared to most genetic diseases and individuals with the disease are otherwise healthy until the onset actually begins, affected parents have to make very difficult decisions about when to tell their children both that the parent has the disease, and that the child might as well.
In such a situation, how would a parent decide to – or be ethically just in – testing a child for the disease? How would such knowledge change the way a child is raised?
It seems that no one can say for sure whether or not they would choose to take the test unless the distinct chance of the disease is truly present; there is simply no way to know how that possibility will truly affect you. Knowing that I cannot know for sure, it is my belief today – certain that the disease does not run in my family – that if I were in a position of risk, I would choose to have the test. For me, it would more be a matter of the looming uncertainty than of the changes I might make in life. Knowing that I was at risk and with an answer of certainty easily obtained, I do not know if I could live a reasonable life wondering. Others might be able to.
George L. Anesi is a first-year medical student and a graduate student in the department of bioethics. He can be contacted at george.anesi@case.edu.
