Experts call for privacy on personal genetic testing


LEGAL AND scientific experts have warned that personal genetic information could be abused by employers and insurance companies, due to rapid advances in scientific technology.

The EU needs to take steps to protect privacy and prevent such discrimination, according to experts participating in a conference on the issue at NUI Galway (NUIG) at the weekend.

Several speakers at the conference, which was chaired by Mr Justice John McMenamin, outlined how genetic-testing techniques may be able to detect the onset of future disabilities and how this technology is used increasingly in both employment and insurance contexts.

The technology can not only detect the likelihood of future illnesses, but it can reveal detailed profiles – such as the prevalence of a “risk-taking” gene, which might be welcomed by an around-the-world sailor, but could be seen as a liability by their insurer or prospective employer.

Without adequate protections in place to prohibit the misuse or discriminatory use of such information by “third parties”, people with disabilities and older people could find themselves in a “legislative and policy vacuum”, the conference heard.

Currently, there is no European level regulation to ensure the privacy of such information or to prevent the discriminatory use of such information, but Ireland and the Netherlands had the most advanced domestic legislation, Prof Gerard Quinn, director of NUIG’s centre for disability law and policy, noted.

Ireland’s 2005 Disability Act did provide a template for some aspects of the issue, he said.

Details of the US Genetic Information Non-Discrimination Act (2008) were outlined by Prof Michael Waterstone of the Los Angeles Loyola Law School and Prof Meera Adya, director of research at the Syracuse University Burton Blatt Institute.

“US legislation in this field has struck a balance between the rights of employers and insurers, and the rights of individuals,” Prof Quinn said.

It was “really interesting to see how the Americans have framed the issues and come up with a solution which may or may not stand the test of time”, he added.

Some legislative progress was made last December, when the EU ratified the United Nations Convention on the Rights of Persons with Disabilities, which prohibits discrimination in a range of fields including employment.

Separately, article 21.1 of the EU Charter of Fundamental Rights expressly prohibits discrimination based on genetic features.

The US has signed the UN convention with a view to ratification by the US senate.

Prof Quinn said that in this context, a transatlantic dialogue between the EU and the US on the issue would be very useful, given the responsibility on European institutions to translate the convention into legal form.