Would people really want to know what lies ahead for them, especially concerning the length of their lives? Science is approaching the ability to make expert predictions, specifically in the concentration of certain diseases such as Huntington’s disease. Huntington’s is frequently used as an example in Biology courses as an autosomal dominant disease.
When you stop to think about it, there is not much that is more horrifying than the prospect of being susceptible to a deadly, irreversible disease that you did not even know you had until well until your life. One of the most terrifying aspects of this disease includes the fact that by the time a person realizes they are in fact a victim of Huntington’s they have already reproduced and passed the gene on, leaving their child with a 50% chance of also developing the disease.
The onset for Huntington’s is somewhat random, and the patient cannot fully be prepared to be attacked by the progressive neurodegenerative disease. However, once the disease has instilled itself into a patient there is no going back as there is no cure or treatment to date.
Presymptomatic testing can be given to healthy or asymptomatic individuals to let the patient know or be aware of their future health in regard to the inherited disease that they are tested for. The uncertainty of what age Huntington’s may begin is a sufficient enough cause for many patients to desire to be tested. Those that are at-risk for Huntington’s feel that there is much to be gained in knowing for certain the outcome of their health, including the medical, social, and mental preparations that must be made.
It is helpful to these patients, particularly in an economic sense, to be aware of what is to come. Long term diseases such as Huntington’s and Parkinson’s disease increase economic burdens for patients over the extended periods of time.
An experiment was conducted to further understand what the close relatives of Huntington’s Disease patients feel in relationship to the idea and outcomes of presymptomatic testing and also the prospect of testing positively. These opinions were then compared to that of medical doctors and randomly selected people with no direct knowledge of the illness.
The experiment was conducted in India, with a random group of participants in each sub-category. Each volunteer was given a short description of Huntington’s Disease and also listened to a speech given by a doctor. All of these subjects were asked to assume that they could be at risk in the future of developing Huntington’s Disease, which no doubt affected the outcome of their decisions.
The family members of Huntington’s patients almost equaled the doctors in their willingness to undergo genetic testing. While a higher number of controls than found in the other two groups were willing to be tested, the family members least wanted the results to be shared, while an almost equal proportion of doctors and “control people” wanted their friends to know. Doctors were concerned about becoming sick after the test results were unveiled, and less than half in all the groups would be willing to communicate results with their spouse. Almost all of the doctors felt that the test results would affect their decision to have children, compared to a relatively smaller number in the other two groups.
What does this all mean? The amount of information one has about the disease vastly affects what the person would do concerning being tested. Not only does it affect the decision to participate in the testing to begin with, but also with whom to share the information when the results come back and then what course of action would be best to take. Knowledge, with this disease as with many other things, will affect any long-term decisions.
References
http://www.neurologyindia.com/article.asp?issn=0028-
3886;year=2006;volume=54;issue=4;spage=359;epage=362;aulast=Nagaraja
http://www.ninds.nih.gov/disorders/huntington/huntington.htm
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1 comment:
Lacey, I think you've done a good job summarizing your article, but I do have some criticisms of your post. First of all, I'm not sure your article counts as a natural science article. You are dealing with the effects of Huntington's Disease, but you are dealing with the psychological effects, which seems to me to make this social science research. Also, I think that your writing could use some work on the sentence and paragraph levels. There are a number of spots that suffer from awkward or convoluted phrasing. Perhaps try to make a trip to Writing Center before you post the final version.
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