Wednesday, February 10, 2016

Born to be Expelled

DNA analysis has come a long way in the short time since the human genome was fully sequenced in 2003. In fact, genetics has expanded so rapidly that modern legislation has struggled to keep up. In most cases, genetic sequencing is used to benefit the individual by providing crucial information about genetic markers indicative of predispositions to health risks for that individual, or purely for informational purposes related to that person's ancestry. The relative cost of sequencing a person's DNA has greatly decreased over time, so naturally it has become a more accessible means of diagnosis.

For Colman Chadam, this was exactly the case. He was born in 2000 with a small congenital heart defect that prompted doctors to sequence his genome. They discovered he had genetic markers associated with cystic fibrosis (CF), although he did not display any symptoms of the disease, and never has. When this genetic information was revealed to the middle school Chadam attended in Palo Alto, CA, he was kicked out.


Although it sounds like a strong case for genetic discrimination, there is more to the story. The middle school was also attended by two siblings who both have Cystic fibrosis. The disease is a genetic disorder that has detrimental effects on the lungs and digestive system, and greatly increases a person's chance of contracting lung infections. People with CF are so susceptible to lung infections that they must be separated from other people with the disease to avoid risking cross-infection. The US Cystic Fibrosis Foundation recommends maintaining at least 6 ft. of separation between affected individuals. Knowing this, the school officials allegedly decided that the safest option was to prevent Chadam from attending the school, even though he does not show any signs of cystic fibrosis. Chadam’s parents were so upset over the school’s decision that they sued the school on the grounds of violating the Americans with Disabilities Act (ADA) and Chadam’s first amendment right to privacy. The case was initially dismissed in a district court, but is currently under the appeal process in the federal 9th circuit court. There is currently no legal precedent for what decisions can and cannot be made based on a person’s DNA. Any instance of genetic discrimination up until now has been decided on a case by case basis, but with the departments of Justice and Education lending support to Chadam’s case, a precedent may be set within the ADA to prevent such cases of discrimination in the future.

Sources:
http://www.sciencealert.com/a-kid-s-dna-got-him-kicked-out-of-school-in-california
https://www.cff.org/Living-with-CF/CF-and-School/Working-with-Your-Childs-School/When-There-s-More-Than-One-Person-With-CF-in-the-Same-School/

Posted by Josef Mazzuchi (2)

9 comments:

  1. Wow, thats terrible. I know CF obviously isn't contagious and a child having it probably wouldn't be much of a distraction so I wonder what was the schools reasoning for kicking him out in the first place? On top of that he didn't display any symptoms making the schools decision even more confusing. Were the other two siblings that had CF kicked out as well? Your post says he was born in 2000 so this was obviously from a few years ago. Do you know what the outcome of this ended up being?

    -Cole DiStasio (Group 1)

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  2. I am surprised that this student's middle school was able to obtain his genetic information without any kind of consent. The importance of confidentiality is always emphasized in the medical field, and for good reasons. I think most people would consider it completely unethical to release any part of a person's health record, especially something like their genome! Had it not been for Mr. Chadam's heart defect, his genome would not have been sequenced in the first place, and the school never would have known about his cystic fibrosis "marker." It seems unlikely that any harm would have been done by allowing him to remain at the school, despite this marker in his genome. Any idea whether the student and his family won the appeal process?

    -Bradley Sarasin (Group 3)

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    1. I know that the family volunteered his genome when he entered the school because it was part of his medical record. They are still appealing the decision in the federal court system, which is a painfully slow process.

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  3. I too am surprised by the school's decision. However, I am equally surprised by the parent's decision to keep their child in school despite his high risk of infection. What is the history of the other two siblings? Is it possible that their constant absence from the school due to infection disrupted their classes? I would be interested to hear more of this story and hear both sides.

    Dasha Agoulnik (Group 1)

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    Replies
    1. The article I read didn't specify much about the other two siblings, but it did mention that the mother of the two children was the one who requested to have Chadam removed due to his condition. The administration at the school revealed it to her even though Chadam was completely healthy.

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  4. This is an issue of scientific ethics. Should peoples genomes be public? I am currently taking a genetics course and this is a major issue that is being discussed. People should have the choice to make their genomic information public if they want. Once people find out what genes they carry, and what diseases they have, it should be their choice to decide if they want to share that with everyone. The other issue with the ethics is should people who are infected with serious diseases, that could endanger other people, have share their genome, like in Coleman Chadam’s case?

    Posted by Caitlyn Cordaro

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  5. Although this is a serious issue today it makes one wonder what the future entails for genetics. The increasing rate at which we learn more and more about the human genome is actual quite frightening as much as it is astounding. It almost seems like we were on the path where parents can request certain specs that they want in a child down to eye color or the shape of the nose, hand over their germ cells and get exactly what they want. Who knows what possible effects such tampering on the genome could have on the individual and on population genetics as a whole with regards to evolution. This progression you mentioned in the field of genetics is definitely something to keep an eye on.

    Allen Currier

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  6. Sorry for the child. Genome sequencing gives us a lot of information, but it can have negative impact on the person if he is not willing to accept the results. Let us say the results show that you are more likely to have pancreatic cancer, you will live you life worried and may not get that cancer in your whole life.

    Mohammed Saleh

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  7. This was very surprising to read, I've never heard of an incident like this. Definitely a strange way of dealing with a middle schooler's health. I agree with an earlier comment, that it is ethically compromising to make public someone's genome, especially a young child's. Having your genome read and interpreted will provide certain information, but ultimately could create a panic, such as the one in this post, without being sure of what will even happen.

    -Erina Taradai

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