Genetic Discrimination

I typically don’t post twice in the same week, but I felt a burning desire to say something about this.

This story comes from the blog “IFL Science” or “I F*ucking Love Science.” It’s actually one of my favorite blogs and something totally worth following. Here’s the LINK to the story in question.

The article does a great job of capturing the scope of the story, but here’s my brief overview. In 2012, 11-year-old Coleman Chadam transferred to a middle school in California. Before the transfer was complete, his parents offered up his medical records as he had suffered from heart complications earlier in life. As a result of genetic testing that had been done, his doctors discovered that he also showed “genetic markers” (I call them mutations on my blog) for cystic fibrosis. Despite the “genetic markers,” Coleman did not show symptoms of the disease.

Already enrolled in the middle school were two siblings with CF, unrelated to Coleman. The parents of the two siblings with CF pressured the school to remove Coleman out of the fear of Cross-Infection between CF patients. After pressure from the family with the CF siblings, the school removed Coleman. The article, however, does go on to note that Coleman was allowed to return two weeks later. In one of my blog posts from the beginning of December, I offer an explanation of what cross-infection is and why it is so dangerous. You can read that HERE.

If you don’t want to go back to my other blog post (no offense taken), IFL Science writer, Ben Taub actually gives a great description:

The disease is caused by a mutation in a gene that codes for the production of a protein involved in transporting chloride ions across cell membranes. This results in abnormal amounts of mucus secretion in several organs, particularly the lungs, which increases a sufferer’s susceptibility to infection. Therefore, when two sufferers of the condition meet, the chances of an infection spreading from one to the other is relatively high.

He also goes on to point out:

However, despite his genetic markers, [Coleman] Chadam does not actually suffer from cystic fibrosis, and therefore does not pose any danger to other students with the condition.

So, what does all of this mean? Well there are a few things that come to mind.

This is a major event, and perhaps the first national example of genetic discrimination. I believe that Coleman Chadam’s civil rights were violated because the school and the parents of the siblings with CF pushed for his removal. In this country we live in, we are all granted the right to life, liberty and the pursuit of happiness. As an American, I expect our country to uphold those rights no matter the circumstance. My expectations are set in stone. All American citizens should share in the liberty and freedom granted to us by the power of the Constitution, Bill of Rights and ensuing amendments. Coleman is no different.

The article from IFL Science goes on to point out that Coleman’s parents have filed a lawsuit because there was a breach of the Americans with Disabilities Act. I agree, there was. Sadly, I am not a law junkie, so I can’t really comment on the ongoing judicial process at play, but from the information at hand, it appears to me that Coleman’s parents were right in bringing this case to court.

I think this is a classic case of an overreaction from the parents of the two siblings with CF. It really isn’t that uncommon for schools to enroll multiple unrelated students with CF. I never personally experienced that phenomenon, but in my work with the BEF scholarship program, it has become apparent to me that these things do happen, and I’ll tell you what, each applicant that I talk to has never said a negative thing about the experience. In every phone conversation I have had with people with CF about this kind of situation, they tell me that the school goes above and beyond to create a safe environment for everyone, despite the very real potential for cross-infection.

The fact of the matter is that the onus falls on the school and CF families in question to create an environment to allow this situation to work. Nobody ever said a little hard work is a bad thing.

While I agree multiple students with CF in a small area may create an unsafe environment, there has to be a moment in people’s lives when they learn how to protect themselves. What I see from this is an opportunity to learn. The parents of the siblings with CF missed an opportunity to teach their kids about the dangers of cross-infection.

It’s sort of like when a school overreacts to a student with a peanut allergy. Immediately the first reaction is to ban peanuts from the campus. I know this is a reality because schools that I have enrolled at have had this policy.

Okay great, so during school hours there is a minimal risk to peanut exposure for the student with the allergy, but what about the real world? What kind of precedent is the school setting? At all points in life, will that student be in a “peanut-free” environment? No. That student must learn how to react if there is an exposure, but beyond that, that student needs to learn how to protect him or herself from coming across peanuts on a day-to-day basis.

I believe it is the same principle with cystic fibrosis. People with CF must learn how to protect themselves from infection and patient interaction at all points during their lives.

Here’s the deal, you never know whom you are sitting next to in a movie theatre. In the real world I may unexpectedly come across someone with CF, just like someone with a peanut allergy may come across someone eating a Snickers. I have to know how to react. A child’s education prepares him or her for the real world – that is about as basic of an explanation as I can give.

From the information available to me, it seems like there was no danger to the siblings with CF since Coleman was not symptomatic (and as far as I know, still is not symptomatic), but to an extent, I have to concede, I can relate to the stress felt by the CF family and potential for danger at some point, BUT, the scenario at hand here was a perfect opportunity to teach children how to conduct themselves in the real world. Unfortunately there was a failure.

The bottom line is that the family with the CF siblings made a bad decision. It’s completely unreasonable to ask for the removal of a child from a school based on the fact that the child in question has the “genetic markers” relating to cystic fibrosis.

At some point people must take responsibility of their own lives. We have to end this belief that it is always someone else’s fault or responsibility regardless of the situation. There are going to be moments in life when adversity will strike. I think I’ve made that pretty clear in the nearly two years I have been blogging. The way we act when adversity enters our lives defines our personality better than anything else.

(Image: Caroline Davis2010 DNA Model/Flickr)