8 November 2016

Dear President Trump:

Genetic discrimination is common but not commonly talked about. New advances in technology allow for the testing of genetic disorders. Several of these tests are taken to predict if someone is likely to have a genetic disorder in the future. A genetic disorder refers to a condition caused by a mutation or variation of a gene in a person’s DNA. Genetic disorders are defined as inherited disorders or hereditary diseases. Not all genetic disorders have been discovered because there are countless different ones, but a few common ones include Down Syndrome, Cystic Fibrosis, and Huntington’s Disease. Life is bound to be difficult for a person who has a genetic disorder. Possibly eventually contracting a genetic disorder makes it more challenging to find a job or a favorable insurance policy, worries people about the reliability of genetic tests, and concerns others' health when in public places.

Having a genetic disorder puts more responsibility on you which can add to your stress. Higher levels of stress may make it more problematic to perform well in a work environment, and if you can’t do that, it will not only hurt you, but it will also hurt the company you work for. This should be common logic. The fact is that yes, most of this is true, but just because it may be tough to work as well as others in a working environment doesn't mean it's not possible. In 2008, The Genetic Information Non-Discrimination Act (GINA) was passed to protect those from genetic discrimination who might eventually contract genetic disorders. GINA works for the most part, but it offers Americans limited protection. It only applies to those who show no symptoms, and it only protects against discrimination concerning employment and health insurance. I am a teenager with a genetic disorder, so I don’t have much experience with genetic discrimination in the workforce or with insurance companies quite yet. I can guarantee you that when I do have to deal with those situations, I would like them to be as painless as possible. I am involved in my school and community, so why should I let my condition limit me in the future?

I have Cystic Fibrosis (CF) which mainly affects the lungs and the pancreas. There are limitations that come with CF. There's no doubt about that. No matter how healthy someone is, everyone has limitations. Just because someone has a genetic disorder doesn't mean that he or she can't strive in life. I participate in five different clubs at school including Student Council, Beta, Campus Ministry, Ambassadors, and Art Club. My time is well spent between these activities. I’m not the most athletic person, but if I want to participate in a sport, I shouldn’t allow myself to be held back just because it may be harder with CF. I wasn’t diagnosed with Cystic Fibrosis until I was seven, so it was a substantial change for me. I all of a sudden had to start taking medicine every time I ate, I had to get up earlier to do breathing treatments, and I also had to continue doing what I had been doing every day of my life before I was diagnosed. However intimidating it may seem, living with a genetic disorder is not impossible.

With the new advances in technology, genetic testing has become more common. Many people wonder how reliable some of these genetic tests are. Most genetic tests only test for the most common mutations of a specific gene corresponding to a specific genetic disorder. This means that the results of the test may be wrong. However, the results can also give someone helpful information. Taking a genetic test can show you if you may eventually contract a genetic disorder. If the test concludes that you are likely to contract one, it will then most likely lead to genetic discrimination.

Your immune system will be weak if you have a genetic disorder. If I'm around people who are sick but don't have CF, I may or may not catch what they have. On the other hand, if I'm around someone who does have CF, I'd be breaking one of the first rules that are taught to CF patients: stay as far away as possible from other CF patients. This is not the case for all genetic disorders, but with CF, specific infections can be passed between patients. This is dangerous, and it concerns the health of other people in society. There are currently more than 30,000 cases of Cystic Fibrosis in the United States. There are approximately 1,000 new cases diagnosed each year. This definitely doesn’t make it easier for CF patients to stay healthy.

I am writing to you about this issue because people with genetic disorders should be treated as everyone else is treated in the world. No matter how relentlessly someone tries, there will always be discrimination; I know that. I am begging you to please do something not relating to work or insurance about the discrimination of these people. Everyone who lives in America has the same rights. It’s time to let these people know that these rights are theirs to keep.

Sincerely,

Elyse D.

Bibliography

Genetic Disorders. Opposing Viewpoints Online Collection, Gale, 2014. Opposing Viewpoints in Context, ic.galegroup.com/ic/ovic/ReferenceDetailsPage/ReferenceDetailsWindow?disableHighlighting=true&displayGroupName=Reference&currPage=&scanId=&query=&source=&search_within_results=&p=OVIC&mode=view&catId=GALE%7C00000000LVWR&u=lafa43079&limiter=&display-query=&displayGroups=&contentModules=&action=e&sortBy=&documentId=GALE%7CPC3021900071&windowstate=normal&activityType=&failOverType=&commentary=. Accessed 10 Nov. 2016.

"Homepage." Cystic Fibrosis Foundation, www.cff.org/. Accessed 11 Nov. 2016.

Rothstein, Mark A. "The Genetic Information Non-Discrimination Act Does Not Protect Americans from Genetic Discrimination." Human Genetics, edited by Louise I. Gerdes, Greenhaven Press, 2014. Opposing Viewpoints in Context, ic.galegroup.com/ic/ovic/ViewpointsDetailsPage/ViewpointsDetailsWindow?disableHighlighting=false&displayGroupName=Viewpoints&currPage=&scanId=&query=&source=&prodId=OVIC&search_within_results=&p=OVIC&mode=view&catId=&u=lafa43079&limiter=&display-query=&displayGroups=&contentModules=&action=e&sortBy=&documentId=GALE%7CEJ3010916230&windowstate=normal&activityType=&failOverType=&commentary=. Accessed 10 Nov. 2016. Originally published as "GINA's Beauty Is Only Skin Deep" in GeneWatch, vol. 22, no. 2, 2009.