By Darren Smith, Weekend Contributor
A California school district faces a lawsuit which has been appealed to the Ninth Circuit were parents of a six-year-old boy having genetic markers for the condition of cystic fibrosis brought suit against the Palo Alto Unified School District claiming the district violated the Americans with Disabilities Act and First Amendment privacy rights of the child.
The case revolves around the issue of genetic discrimination. According to the lawsuit, parents enrolled six-year-old Coleman Chadman at Jordan Middle School. The parents disclosed the genetic marker for Coleman on an interview form requesting information as to the child’s medical conditions. As a result of that disclosure, and other events, Coleman was prohibited from attending school due to DNA markers for cystic fibrosis and not for any condition presently manifesting itself as a diagnosis of cystic fibrosis.
The case demonstrates a worrying problem leading to discrimination based on genetic factors where the expression of certain genes is not a guarantee of having such medical problems yet the discrimination is nevertheless applied.
After receiving a summary U.S. District Court dismissal on the parents claim against the school district, the matter was eventually appealed to the Ninth Circuit. According to the opening statement in its filing with the Ninth Circuit plaintiffs alleged following.
Events leading to the lawsuit began in 2000, when Coleman was diagnosed with a life-threatening cardiac defect required immediate surgical intervention to save his life.
The defect was congenital in nature and is part of newborn Coleman’s medical treatment, a genetic screening was performed. That genetic screening revealed Coleman carried certain genetic “markers” associated with persons who may or may not develop cystic fibrosis, a life-threatening childhood illness. Further diagnostic tests were performed on Coleman which revealed he did not have cystic fibrosis.
Although Coleman’s medical condition has been carefully monitored since birth and having emergency cardiac surgery that saved his life, Coleman has never had cystic fibrosis and, in all respects, is a healthy teenager.
On or about July 22, 2012, Mrs. Chadam completed and delivered a form entitled “Student Registration” to the defendant school district and endeavored to enroll both of her sons at Jordan Middle School.
On or about August 1, 2012 Mrs. Chadam provided a “Report of Health Examination For School Entry” to the school district regarding Coleman, the contents of that document contained private, personal and privileged medical information of Coleman
On or about August 2, 2012, the Chadams received a Secondary Admit Slip from the school district stating that their sons had been assigned to attend the Jordan Middle School.
Between August 2, 2012 and August 16, 2012, the Chadams provided additional medical information and forms to the school district regarding Coleman. This additional information was also private, personal and privileged medical information of Coleman.
On August 16, 2012 the boys began attending Jordan Middle School. On August 22, 2012, one of Coleman’s teachers and employees of the school district contacted Mr. and Mrs. Chadam to make an inquiry regarding Coleman’s medical condition.
On or about September 11, 2012, one of Coleman’s teachers, while conducting a parent-teacher conference with the parents of other students at the middle school, disclosed private, personal and privileged medical information regarding Coleman to other parents specifying that Coleman had the disease of cystic fibrosis.
Later the same day, September 11, 2012, the Chadams were asked to attend a meeting with Gregory Barnes, Jordan Middle School Principal, Linda Lenoir, a school district nurse, and the vice president and administrator of the six grade. The Chadams attended this emergency meeting.
At this meeting, the Chadams were informed for the first time by the school district that other students at Jordan Middle School had active cystic fibrosis and that these other parents had discovered Coleman’s condition.
During the meeting, the Chadams informed the school district Coleman did not have cystic fibrosis and that he posed no health threat to any other person. (A medical concern is that, two children having cystic fibrosis can pose a medical threat to each other on the basis of that condition due to the possibility of receiving life-threatening infections from the other.)
During this meeting, Gregory Barnes stated to the parents “we are learning as we go here.”
Later that evening, Mrs. Chadam received a telephone call from one of the other parents. During this telephone call, the parent aggressively interrogated Mrs. Chadam about Coleman’s medical history and condition, whether Coleman received any “home treatments,” and whether Coleman had ever been hospitalized. Unrelated and irrelevant to any medical issue, the parent demanded to know for how long the family intended to reside in Palo Alto and whether they owned or rented their home.
On or about September 13, 2012, Carlos Milla, MD, authored a letter to the school district discussing the alleged medical issues caused by the presence of Coleman at the middle school. Dr. Milla’s letter states, “I have been asked to comment.” Dr. Milla’s letter recommends Coleman be removed from the Jordan Middle School for the safety of the children of the other parents.
On September 14, 2012, Mrs. Chadam had a conversation with Gregory Barnes during which Mrs. Chadam informed Barnes that she did not wish to have her son transferred out of Jordan Middle School. In this conversation, Barnes informed Mrs. Chadam that the other parents withdrew their children from attending Jordan Middle School so there was no need “to make any changes” at the present time.
From September 14 two September 17, 2012, there was a continuous stream of email communication between the other parents and representatives of defendant Palo Alto Unified School District, including a statement from one of the other parents that the “ideal solution” was for Coleman to be removed from Jordan Middle School. The other parents further complained that the privacy of their children was being compromised yet expressed no concern for the privacy of Coleman, his brother or his parents.
On September 16, 2012 the school district received an unsigned letter reciting that the alleged harmful effects of individuals who are afflicted with cystic fibrosis have on each other.
On September 16, 2012 the other parent sent a 10 page letters to the school district nurse requesting that Coleman be removed from the Jordan Middle School so that her children can resume attending school.
On September 17, 2012 the school district received another letter from Dr. Carlos Milla, MD in which Dr. Milla revises recommendation that children with cystic fibrosis “should not be” in school together. He now recommended that children with cystic fibrosis “must not be” in the same classroom or school. No explanation was provided by the doctor regarding why he changed his opinion.
On September 17, 2012, Gregory Barnes telephoned the Chadams and stated that based upon Coleman’s private, personal and confidential medical information, and the demands of the other parents, the school district intended to transfer Coleman out of the Jordan Middle School to another middle school 3 1/2 miles from the Chadams’ home.
On September 17, 2012 theChadams sent an email letter to Charles Young, assistant superintendent of the school district, demanding to be provided that documentation and evidence upon which the school district based its decision to transfer Coleman out of the middle school. The same demand was repeated to Mr. Young in person the following morning.
On or about September 20, 2012, the defendant school district was offered a letter from John Morton, M.D., Coleman’s last physician before the Chadam family moved to Palo Alto
Dr. Morton states,
It is unfortunate this boy has been given the label of CF and is now recognized that there are probably many of these children in the community who will be diagnosed as CF carriers but have a second minor gene lurking in the background, but no disease,
I have seen this boy for the last five years on a regular basis to check that there is no sign of CF disease and also that there has been no progression of the symptoms and during that time he has shown no signs of progression. He has a slight asthma tendency and also some nasal allergy but nothing else evident related to CF. for this reason, I don’t think that this boy is any risk whatsoever to other children with CF even if they were using the same classroom. Quote
On September 20, 2012 the Chadams met with Charles Young. During this meeting, Mrs. Chadam reiterated that Coleman did not have and had never had cystic fibrosis. When asked the medical basis for the school district’s decision to transfer Coleman out of Jordan middle school, Young said it was based on a letter “from a top Stanford doctor,” but refused to disclose your identity of the “top Stanford doctor.” When the Chadams pressed further for the name, Young suggested making a formal “Freedom of Information” request to obtain the name of the doctor but he continued to refuse to identify the “top Stanford doctor.”
On September 24, 2012, Mrs. Chadam again met with Charles Young and offered to provide additional medical evidence that Coleman was not a health risk to anyone.
On September 28, 2012 Charles Young informed Mrs. Chadam by telephone that the school district had formally decided to transfer Coleman out of Jordan Middle School.
On September 28, 2012, Charles Young wrote to the Chadams formally announcing Coleman’s involuntary transfer of schools.
On September 10, 2012, while Coleman was attending Jordan Middle School and in the middle of a class, Principal Gregory Barnes entered the classroom, whispered to the teacher and then left. Then, in the presence of his friends and classmates, teacher removed Coleman from the classroom to the hallway and informed Coleman that it was his last day of school at Jordan. The teacher then asked Coleman if he wanted to go back into the classroom and say goodbye to his friends. Extremely distraught, Coleman declined and walked home.
On October 12, 2012, the Chadams brought a civil proceeding against the school district in the Santa Clara Superior Court. That civil action sought solely injunctive relief based on the school district enjoining it from transferring Coleman out of the middle school.
The California court system reviewed a plea for injunctive relief that was heard on its merits, the parties however settled the matter and Coleman returned to attend Jordan Middle School.
In addition to the foregoing alleged unlawful disclosure of Coleman’s private, personal, privileged medical information on or about September 11, 2012, plaintiffs are informed and believe and thereupon alleged that the school district further provided additional private, personal and medical information regarding Coleman to the other parents with no prior authorization, permission, notice or knowledge of either of the Chadams.
The Department of Justice filed an amicus brief citing a state interest in preserving the rights of citizens as provided by the Americans With Disabilities Act.
In the Department of Justice’s brief the government argued that the case raises critical legal, medical, ethical and moral issues of apparent first impression. With the accelerating advance of genetic technology and genetic information increasingly available to greater sectors of the public, legal disputes over access and use of this genetic information are inevitable. While the case involves alleged wrongful disclosure and use of genetic information by a public school district, it raises broader issues of who gets to know private genetic information and what uses can be made with that knowledge. Should employers, insurance companies or prospective spouses know genetic information regarding employees, insureds or proposed marital partners?
The legal question to be answered by the court in this case will invariably suggest an answer to all those questions. Specifically, this court will decide whether a person perceived or regarded as disabled solely on account of him or her possessing certain genetic markers falls within the class of persons protected by the Americans With Disabilities Act and the federal Rehabilitation Act.
I find the actions of the school district to be upsetting and troubling. The idea individuals be held to greater scrutiny, denied rights or charged higher premiums for other costs associated with non-medically related intangibilities such as their DNA sequence is in many respects classifying and discriminating against a group of individuals based upon issues relating to ethnicity and family history; quite literally in fact what can be called plainly a corruption of blood. In other cases in particular, the medical condition Sickle Cell Anemia affects African-Americans and greater proportion than it does other racial groups. It is further magnified as in this case it can be interpreted a form of discrimination nearly identical to that of skin color, which is also derived from genetics, but instead based on a predisposition to genetic disease. It is the content of their genetic makeup that causes these groups to be disparaged.
By Darren Smith
Sources:
Amicus Brief, Department of Justice
The views expressed in this posting are the author’s alone and not those of the blog, the host, or other weekend bloggers. As an open forum, weekend bloggers post independently without pre-approval or review. Content and any displays or art are solely their decision and responsibility.
Palo Alto is a city of the very wealthy who demand and receive coddling by their public servants. I grew up in Palo Alto, and attended Jordan Middle School. That was before Silicon Valley exploded and took their people and wealth to Palo Alto and up to San Fransisco. I cannot live in the city that I grew up in. It’s not the lack of money, it’s the lack of humanity.
I never considered how a genetic predisposition to a disease could be considered the same as genetically caused skin color, and that if discriminating against people for their skin color is illegal, then the same should be applied to the genetic condition. It’s easy to understand the reasons to prohibit treating people with disabilities differently than people without disabilities, just as for race, religion, and all the other ways people may be categorized. It’s perhaps not so easy to understand a bias against an otherwise healthy person who simply has genetic markers that indicate a greater likelihood of developing a disease, and see why that should be illegal. Because of your summary explanation, I now understand. Thanks, Darren.
Yet another exhibit on the pitfalls of an intrusive government. If you don’t like this, then stop the spread of government into every nook and cranny of our lives. Its role is infrastructure, defense, and basically that’s about it. Government makes a poor parent.
Here in CA, we also have to submit medical forms to enroll in school, both from the pediatrician and dentist.
They had no right to his private, protected medical records. They had no right to violate HIPPA Laws and release such personal, protected medical information to the public. They had no right to exclude this child.
It sounds as if there are already multiple children with CF enrolled in the school. In addition, children are vectors for disease. You can’t really sugar coat it. Once they hit preschool, they all start getting sick over and over again until they build up an immunity. Cold and flu season always hit schools hard. If your child is so medically vulnerable that they cannot be exposed to anyone sick, then it is the duty of the parents to protect them by homeschooling, or some other similar education program where the child is not exposed to a lot of people. That’s like sending a child on chemotherapy to school with the prohibition that he must not get sick. It just can’t be done. A child with active CF that has infectious bronchitis or pneumonia would be kept home, just the same as any other seriously ill child.
It is also unfair for one CF child to gain admittance to the school if by so doing they are able to prohibit admittance to other CF children. One way for me, another for thee.
They also need to sue the school for violation of HIPPA, which should be an easy win.
What troubles me is the amount of money this family must have spent to fight this so long in court. Court cases are financially out of reach for many people. How many other families have been abused by such intrusiveness, but lack the means to fight for what’s right for their child?
Darren is right that this is one of those ethical considerations inherent in modern science. Science is advancing more rapidly than our laws, which are playing catch up. We do need protection against discrimination based on genetic testing.
Going in one direction there is the universal attempt to raise the level of safety through fighting disease and malnutrition. The public and private sector is joined throughout the world to ensure that the level of health and opportunity rises. Overall it is. In spite of the immediacy of the world’s woes through the media, the world in general is profiting from the argument that everyone should be given the opportunity to start from the same line. Then we have these inbred people in Palo Alto scrutinizing children to the level of including their D N A. Hitler would have been proud of them.
This action is typical of the mindset that produces “zero tolerance” policies. These people lack the sense required to make subtle (sometimes not so subtle) judgements. These people “teach” our children.
So many errors by the school it is hard to count. I hope the court slaps them silly. Dismissed previously? Chickens**t!
When a child moves to another state he or she is obligated to have a medical exam. Blood work is done, a licensed doctor does his or her thing and the child is screened for any obvious medical problems that might need attention for the child’s sake or for the sake of the students with whom the child will be in contact. Beyond that this seems like a draconian level of scrutiny that must be addressed by the legal system.
Palo Alto is an extremely wealthy area inhabited by the tech community. These people are for the most part anal retentive and this may be the result of having so many of these types congregating. The parents should seek legal redress and the government oversight agency should investigate. If the school loses students then great. The school seems to be at fault here initially for being extremely obtuse in its acute attention to stuff that is none of their business.
There is carrying the d n a that predisposes one to CF and then there is carrying the d n a that predisposes a child to stupidity as is illustrated in their parents.
Having sat in on myriad teachers meetings, this is only the tip of the iceberg. I am not sure why the parents turned over the DNA sample (either as a gift or at the request of the school) but I can guarantee you this is not the last school you will hear this problem from. The SCHOOL is aware of the rules, but some of the individuals do not think the rules apply to them.
Infect the Principal as soon as possible.
The parents bear the first responsibility for freely disclosing this medical information about their son. HIPPA insures that personal health information is private. The teacher disclosing this information should be indicated for the disclosure. I have worked in healthcare for over 30 years and these rules are drilled into everyone’s head on a yearly basis. This is obscene! Ultimately, it is the rights of the child that have been violated.
That’s it exactly Prairie Rose. I was reading this detailed account by Darren and kept thinking of that movie but I couldn’t recall the name of it. I can understand all of the CF parent’s concerns but I don’t understand why the Chadams decided to disclose the genetic markers when their son had no sign of the disease. Were they using it to get him enrolled in this particular school? What responsibility does the school have to the other families when someone discloses personal medical information about their own children?
Gattaca in action.
Perhaps the parents of some of the 6th grade girls were equating “inherited” with “sexually transmitted” and were worried?
Or were worried that their grandchildren might have CF when their daughter married him 12 years later, having fallen in love with him in 6th grade?
There are CF gatherings. At a CF Camp they were using the same equipment, not sterilized between uses, and sometimes they transmitted diseases. So healthcare workers who treat lots of active CF patients in a row wear protective gear and isolate them in hospitals for the other CF patients’ sake. It is not, itself, transmitted.
In 2009 39% of CF patients were married or living with a partner. It is not dangerous to others. CF patients with active infections should avoid other CF patients.
CF is inherited. What are the other parents concerned about?
Sounds like some parents and the school administrators engaged in actions similar to the Salem witch hysteria.