November 2011 European Genetic Privacy and Discrimination Policy Focus of NUI Galway Conference

The Centre for Disability Law and Policy at NUI Galway will co-host a conference with the Burton Blatt Institute entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’. The one-day conference will take place on Saturday, 19 November, in Áras Moyola, NUI Galway.

The purpose of this conference is to examine the case for a European level legal and policy response to protect the privacy of genetic information and to prevent genetic discrimination, particularly in the employment and insurance contexts. 

The science of genetic testing and related technology is in the process of advancing.  Among other things, genetic testing technology may well offer the prospect of being able to detect the onset of future disabilities.  The technology is becoming more prevalent and is being used increasingly in both the employment context and the insurance context. If insufficient protections are not in place to prohibit the misuse or discriminatory use of that information by third parties like employers, insurance companies, educational facilities, then such a legislative and policy vacuum could further setback the inclusion of persons with disabilities and older people into the community.  To date, there is no European level regulation protecting the privacy of such information or protecting against the discriminatory use of such information.

Professor Gerard Quinn, Director of the Centre for Disability Law and Policy at NUI Galway, said: “This conference is exciting because it looks forward and not backward.  It looks to the positive potential of new genetic information technology in detecting future disabilities.  And it also looks at the need for appropriate regulation to ensure personal genetic information is not misused.  It seeks to learn from good transatlantic developments in the US and seeks ways of ensuring that information privacy is respected in Europe and Ireland.  I recommend it to anyone interested in new technology and disability.”

For further information, or to register, contact Aisling de Paor in the Centre for Disability Law and Policy at 091 494017 or aisling.depaor@nuigalway.ie.

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