Huntington's Disease: 50/50 Chance

After many months of convincing the clinic at New York-Presbyterian Hospital/Columbia University Medical Center to test her for Huntington’s disease, Katherine Moser’s results finally came in. At age twenty-three Katherine Moser was tested positive for Huntington’s disease. “Huntington’s disease is hereditary and, at the moment, an incurable brain disorder where one’s nerves cells in parts of the brain begin to perish or degenerate (Huntington's Disease).”  This disease usually takes over during one's mid forties. Ms. Moser thought she has prepared herself enough for this outcome but she was far from prepared. She soon started seeing a therapist, during her fist session she realized how people view HD, as well as people who know a lot about it. Her therapist told her that, “it was her moral and ethical obligation not to have children” (Harmon).

The fact that the therapist had the nerve to tell Ms. Moser that is beyond shocking to me. The view point that people with Huntington’s disease should not be allowed to have children is ignorant and unjust to the people diagnosed with HD. There is a 50% chance that the child will not get Huntington's disease and that is a chance that parents should be allowed to take. And even if the child does test positive for Huntington's disease they still have plenty of time to live fulfilling lives.

“Since 1986 people who are at-risk for Huntington’s disease have been able to get tested for the mutation on chromosome 4 that is the cause of the disease Ethical Issues of HD.” Since Huntington’s disease is hereditary this makes it very difficult for an at risk couple to think about starting a family if they tested positive for HD. This began the great debate on whether or not people diagnosed with HD should have children. If one knows they have HD then they also know that they have a 50/50 chance of passing it on to their offspring. Many think that a 50/50 chance is too great of a risk to take and that it is morally wrong to possibly subject your children to an incurable disease like HD. Others believe that it is solely up to the at risk couple to decide whether or not they should have kids.

There are even many new technologies that insure that couples can have perfectly healthy babies, such as in vitro fertilization HD Buzz, Also scientist are progressing towards finding cures for Huntington’s disease so that at risk children can be born into the world where there is a cure for HD.

As I began to think about this great debate I feel that it is no one’s business to tell someone whether they should or should not have kids. Many people all their life dream of starting a family and just because they find out that they have a disease such as Huntington’s does not mean that a lifelong dream of theirs should be crushed. Yes, I’m aware that there is a great possibility that their child may have the same fate as their parent, but that is for no one to decide except the parents.

People with Huntington’s disease do not start showing signs until they are usually forty years old and forty healthy years of life is better than none at all. And it is quite possible that if a child is born with a risk of getting HD today that they may find a cure by the time they start to show symptoms. Soon enough scientists will find a cure for HD, Axokine and neurotransplantation are two current treatments that are advancements in finding a cure for HD (http://www.ncbi.nlm.nih.gov/). So there is no reason that at-risk couples should be pressured into not having kids, because they can hold out for a cure if their child does end up with the disease or allow them to live the most normal life possible until the symptoms start. And don’t forget that there is still that fifty percent chance that their child may be risk free from getting Huntington’s.

Many people may disagree with me for various reasons. One might be that they don’t think its right to bring a child into this world that could possibly have an incurable disease such as Huntington’s. Some view this as the same as telling someone who can't support a child not to have one. But these two incidents could not be more different. A child who does have Huntington's disease has until they are at least forty years old to show symptoms of it. Forty years is a long time to live and be a functioning memeber in society as well as serve a purpose in life. They will need to be supported when their symptoms hit and that is a parental responsibilty that should be discussed before having children. Why it is okay to tell someone who is not able to support a child not to have kids is because unlike a child with HD, they don't have a 50% chance. With parents knowing that they can't support a child they are putting their want to have a family above the life that the child may have.

Many people who disagree with me are pessimists and only see the bad in having children that have a fifty percent chance of getting Huntington’s disease. On the other hand, I am an optimist along with many who have te same viewpoint as me, and we see the good in bringing new life into the world whether or not it is at risk of having HD. No one has the right to tell someone that it is not ethical for them to start a family of their own just because they have a hereditary disease like Huntington’s. Everyone should be free to make their own decisions no matter their medical situation.

                                                Normal Brain vs. Brain Affected by HD

Work Cited

Harmon, Amy. "Facing Life With a Lethal Gene." The Best American Science Writing. Ed. Sylvia 
     Nasar. New York: Harper Perenial, 2008. 1-16.