If your job was at risk, would you be willing to reveal your genetic code to your employer? And could the law protect you if you refused? Recently, a US jury in Georgia answered that question when they awarded $2.2million (€2million) in damages to two warehouse workers who were demanded by their employers to surrender genetic information, a sample that contained their DNA.
The demand was issued so the company could identify the person responsible for leaving faecal matter on warehouse property. This most unusual case is the first of its kind to be won under the new US Genetic Information Nondiscrimination Act (Gina).
Although the genetic evidence proved the workers to be innocent, the event prompted both men to sue for damages under Gina. The decision is a landmark in US law: it represents the first time Gina has been used to protect worker discrimination due to their genes. Such legislation, however, is virtually nonexistent in Europe and is patchy at best in Ireland, legal experts say.
"It's a landmark case," says Dr Aisling De Paor of Dublin City University's School of Law and Government specialising in genetic policy. "We've been waiting for a case like this for a long time."
Gina has been in place since 2008, but the EU has been slow to act in introducing a similar law that specifically protects a worker’s genetic information. The EU began pursuing a package that aims to reform EU data protection in 2012, but very little has happened in the time since.
“There is effectively a patchwork of varying levels throughout the member states” explains De Paor. “Some countries have an active, specific legislation. Some countries have regulated under other pieces of legislation.” Having this mixed approach for workers throughout the EU “is obviously ineffective”, she says.
The closest that Ireland gets to protecting someone’s genes is under Part 4 of the 2005 Disability Act, which states that genetic test results cannot be used in relation to employment or insurance, and that anyone being tested must be informed of the possible outcomes. “The Disability Act makes it quite clear that no information during genetic testing, regardless of being positive or negative, can be taken into account,” says University College Dublin’s Asim Sheikh, Barrister-at-Law.
A demand for your genetic information would also fall under data protection law. “The Data Protection Commissioner has issued very specific guidelines in relation to if an insurer has any information, even if given inadvertently by an insured individual, they must discount that information regardless of what the tests say,” says Sheikh.
Part of the reason for Gina coming into effect was due to the more privatised healthcare environment in the US, where there was heightened concern of being denied health insurance because a person’s genetic code indicated susceptibility to some diseases, says Sheikh.
“With any new technology the dangers of abusing the technology to the advantage of a few undoubtedly exists,” he says. While both Gina and the Disability Act in Ireland were attempts to prevent such abuse from happening, neither law was influenced by the other. “We don’t design our laws based on a few stories in another jurisdiction that might not be representative of issues here,” says Sheikh. “We took a very proactive step in the 2005 Act because of the lack of certainty it presented. That is not to say we should take our eye off the ball.”
Nonetheless, if the case in Georgia had been conducted here legal experts would still need to rely on a small section in an Act almost a decade old. “There is an absolute lack of clarity and I would say ineffectiveness with these [current] provisions” says De Paor. “It’s roundabout, it’s complicated, so as you could imagine confusion could arise in a similar issue in Ireland.”
Fortunately, the situation could improve in the near future. The EU is currently looking to strengthen its laws regarding accessing and using personal data, while the National Disability Authority is currently looking to expand genetic testing legislation in Ireland.
“There needs to be an interdisciplinary approach,” says De Paor. “I think you need to engage the science and the technology, and try to be up to date. There needs to be education in regards to genetic science and technology. Where is it at? What can it tell us? What is the future orientation? That needs to be part of the conversation for policymakers. One of the challenges of genetics is that the science and technology is moving so quickly.”
Fintan Burke is a Masters student in Science Communication at Dublin City University