Testing someone’s DNA was originally a huge step forward in the eyes of the law; it allowed scientific prove that someone was responsible for a crime. DNA testing, or genetic fingerprinting, has now become synonymous with solving crimes, mainly thanks to detective dramas like CSI or Law and Order. However, with an increase in the availability of DNA testing there is also growing concern that DNA profiling could impact privacy and discrimination.
It may be hard to imagine someone receiving preferential treatment or being the victim of prejudice based on the contents of their DNA, however with the decreasing cost of DNA testing it is becoming a very real worry. The DNA testing site 23andMe charges £125 for a DNA analysis which will provide information on your genetic makeup. The results provide information on inherited conditions, potential drug responses and any genetic risk factors for other diseases. This knowledge can be of immense importance to those who may be susceptible to a disease, allowing them to change their life style to improve quality of life. However, this information may not always be used beneficially and can be used against an individual.
For instance, in 2012 in Palo Alto, a few weeks into the school term Colman Chadam, entering sixth grade at the time, was told he had to leave school and wasn’t allowed to attend anymore. The reason: his DNA. Colman has recessive genes for cystic fibrosis, meaning he does not have the disease but has half the genetic material needed to develop the disease. Those who suffer from cystic fibrosis, an inherited lung disease, are advised not to be around other cystic fibrosis suffers; they’re susceptible to lung infections which could be a danger to other sufferers. The school already had two siblings with cystic fibrosis, so Colman was dismissed from school. The problem was he didn’t actually have the disease, only the recessive genes. The reason the school decided to ban Colman was they misinterpreted some information they had received and believed he actually had cystic fibrosis. When he was younger Colman’s doctors performed a DNA test and discovered that he possessed the recessive genes and his parents made a note that he has these genes when filling out a medical form for the school. Eventually, that information was passed on to teachers who, allegedly, then told the parents of two other students who did, in fact, suffer from cystic fibrosis. Those then parents demanded the Chadams remove their son from school. Eventually, the school discovered its mistake, that Coleman did not have the disease only the recessive genes, and after missing only a few weeks of school he was allowed back to school. Nonetheless, Coleman’s family attempted to sue the school on the grounds of genetic discrimination. This rather strange case represents one of the earliest cases involving unfair treatment based on the composition of someone’s DNA. Unfortunately, at the time there was no legislation concerning education and DNA discrimination so Coleman’s family’s case was dismissed in 2012. However, recently the case has been appealed and it is hoped that the result of this case will begin to lay the ground work for legislation involving DNA discrimination in schools.
In anticipation of this type of case and since the wide spread availability of DNA testing, The Council for Responsible Genetics has worked to compile cases of genetic discrimination and attempt to laying the groundwork for future legislation. Currently, they have found almost five hundred cases in which individuals have been barred from employment or lost their health insurance based on their genetic material. Thankfully, the government has also exhibited some foresight and, in certain circumstances, there are laws in place to protect against this type of discrimination, at least concerning employment.
For instance, in America the Genetic Information Non-discrimination Act of 2008 is a federal law that protects Americans from being treated unfairly because of differences in their DNA. In the UK, the Equality Act 2010 restricts what employers can ask about in pre-employment medical checks. This means that employers can only ask for information directly relevant to the applicant’s ability to carry out the work. Furthermore, a voluntary agreement between the Government and the insurance industry limits insurers’ access to genetic test results. However, this agreement ends in 2017 so it is unclear what the policy concerning genetic information and insurance policies will be in the future.
While the existence of legislation concerning DNA privacy is beneficial and can protect an individual’s rights there are cases where this legislation can be abused to take advantage of employers. For example, a pair of employees of the Atlas Logistics Group Retail Services, based in Atlanta, were the suspects in an investigation after someone, over a period of weeks, had been defecating on the floor of the company’s warehouse. To determine who the poop-etrator was the company took cheek swabs from the two suspects and found that neither of them was responsible. Eventually, the company found the employee responsible, however the two prior suspects sued the company based on a breach of privacy. The company claimed that no specific genetic information was obtained and it was only used as a comparison in an attempt to stop damage to their property, however the company were still forced to pay $2.2 million in damages to the two employees. While it is understandable that the men were subject to unlawful breech of privacy, it also appears extreme that the pair should receive such a large sum. While this is one of the more entertaining examples involving DNA testing and a breach of privacy, there is concern that this type of problem could become the source of numerous lawsuits in the future.
Overall, it is likely that the number of cases involving genetic discrimination or DNA profiling is going to increase. Ideally, this will prompt the development of new legislation to protect both companies and individuals in an attempt to minimise discrimination. Hopefully, it will never reach the point in which we are required to attach a genetic profile to our CV.
Steven Gibney
Image courtesy of PublicDomainPictures, image hosted on pixabay.com.