Exclusion driven by genetic discrimination?
By Natasha Isaac.
The Times recently reported on the story of 11-year-old Colman Chadham who was excluded from Jordan Middle School, California because the school believed, incorrectly, that he was at risk of developing cystic fibrosis. [1]
Why was Colman excluded?
Colman, a healthy child but with genetic markers which were associated with the disease, was excluded because the school decided that, on account of these markers, he posed a health risk to two other pupils, a pair of siblings (A and B). They suffer from the disease but Colman does not.
Individuals with cystic fibrosis (“CF”) can carry bacteria which is dangerous to other sufferers of CF. Hence, a person with CF, is advised to stay several metres away from other non-siblings affected by the disease
Colman’s medical information was disclosed in confidence by his family when they enrolled him at Jordan Middle School in 2012 but was later passed on to the parents of A and B. The Chadams have accused the school of passing on private medical information.
Under pressure from the parents of A and B but against the wishes of Colman and his family, Palo Alto Unified School District (PAUSD) decided in October 2012 to move him to a different junior school 3½ miles away.
Colman, described by his lawyer as a “feisty kid”, planned to stand outside Jordan Middle School with a sign which read “I am not a danger” but his parents thought better of it. Instead the Chadams, at first instance, filed a lawsuit against PAUSD to prevent the district from transferring their son to a different school.
What happened next?
Several weeks later the parties settled the case and Colman returned to his local school after missing just over two weeks of lessons. However, the legal battle continued to rumble on and the fees piled up.
In 2013 the Chadams sued the school authority for the “emotional distress” caused by discrimination and invasion of privacy. A district court dismissed the case, ruling that the school authority “reasonably believed that CC [Colman Chadam] posed a health risk to the two children at school with cystic fibrosis”.
When asked the medical basis for PAUSD’s decision to transfer Colman out of Jordan Middle School, Charles Young, the Assistant Superintendent, said that it was based on a letter “from a top Stanford doctor,” but refused to disclose refused to disclose this unnamed doctor’s identity. When the Chadams pressed him further for the name, Young suggested that the Chadhams make a Freedom of Information Request, but would still not disclose the source of the medical information”.[2]
The science behind the story
Although the diagnosis of CF is usually straightforward, care needs to be exercised in the use and interpretation of genetic tests: genotype information is not the final arbiter of a clinical diagnosis of CF.[3]
The disease is caused by a mutation on a specific gene, called CFTR. This gene is found on chromosome 7, and since we all have two copies of this chromosome, we also have two copies of the CFTR gene. CF is a recessive disease, so an affected person needs to carry two defective copies of the gene (one from each parent). A person with only one defective copy of the gene is a “carrier” – they do not have the disease, but they can pass the faulty gene onto their children.
To make the situation more complicated, there are lots of different ways in which the CFTR gene can be mutated – not all mutations cause “classical CF” or CF at all – so possession of two faulty CFTR genes does not necessarily mean that the person will have CF. Hence, CF is a diagnosis that is made by a clinician, looking at the health of the child before them, using the genetic test results to assist in their assessment. CF cannot be diagnosed by lab test alone.
Legal action continues
At first, a district court found in favour of the PAUSD but US government lawyers urged an appeal court to reopen the discrimination case brought against the school district by Colman’s parents.
In January 2016, lawyers from the US Department of Justice and Department of Education filed an amicus curiae [“friend of the court”] brief in support of the Chadams, concluding that the federal Ninth Circuit court of appeal “should reverse the district court’s judgment and remand the case for further proceedings”.
The federal government now says that this constituted a “legal error”. It therefore remains unsettled whether there has been a breach of the Americans with Disabilities Act of 1990 (similar legislation to the Equality Act 2010 in the UK) and whether it is possible to discriminate against someone on the basis of their genes.
Genetic discrimination in the UK
There is currently no legislative protection in the UK against genetic discrimination although there are non-legislative measures such as the voluntary moratorium on insurers’ use of predictive genetic tests. This was put in place in 2011 and has now been extended until 2019. The only test that is approved by the Government for use within insurance is the genetic test for Huntington’s disease.
Before the Equality Act came into force in 2010 a proposal was made to include genetic predisposition as a protected characteristic, but this was not incorporated. The campaigns group, Liberty, felt that this was a missed opportunity, noting that Britain’s DNA database is the largest in the world and therefore needed protection from abuse. Others, such as Soren Holm, Professor of Bioethics at Cardiff Law School even thought that the protected characteristics listed in the Equality Act should be broader. As he pithily put it stating: “there are plenty of other pieces of health information which might be used to discriminate.”
If a genetic discrimination case were to occur in the UK, there is the possibility that a court may hold that the victim’s Article 8 and Article 14 rights under the Human Rights Act 1998, had been breached. Article 8 provides for respect for private life – family life home and environment, which must be afforded without discrimination (Article 14).
Were the UK courts to recognise that it is possible to discriminate on the basis of genetic predisposition, this would impact on exclusions in schools – for example in cases similar to Colman’s. However, in this author’s view, it is likely that possible genetic discrimination would be more of an issue at the admissions stage.
[1] http://www.thetimes.co.uk/tto/news/world/americas/article4682008.ece
[2] https://assets.documentcloud.org/documents/2701506/Opening-Brief.pdf
