EuroGentest publishes genetic testing information leaflets
Developing a harmonised genetic testing system in Europe is the goal of the five year EU-funded EuroGentest project. An estimated 30 million people suffer from a genetic disease within Europe, which accounts for an economic burden of EUR500 million on the continent's healthcare systems. 'Genetic testing is growing at between 200 and 300% per annum with tests for over 1,000 conditions currently offered. In addition we are rapidly moving into the era of pharmacogenetics and personalized medicine,' says Professor Jean-Jacques Cassiman of the Catholic University of Leuven, Belgium, and coordinator of EuroGentest. 'It is essential this is done in a structured way with the public able to maintain confidence in the quality of testing and counselling being provided. This is quite a challenge and can only practically be tackled through a collaborative effort supported by the EU. ' The project, which brings together geneticists, doctors, ethicists, patient organisations, lawyers and corporate representatives, is also tackling the widespread issues arising from testing, including legal, health policy and economics impact, intellectual property rights, ethical and social questions; such as confidentiality and informed consent. Underpinning all these actions is education. EuroGentest has just published a series of 11 patient information leaflets on the main topics in genetic disease and genetic testing. They include information on genetic inheritance patterns, chromosome problems and genetic testing and appointments. Also included is a glossary and frequently asked questions (FAQ) leaflet to help patients and families when speaking to a specialist about genetic testing. The series is the result of the first major survey of the quality of current written patient information across the EU. Researchers interviewed patients and families, who have had first hand experience of genetic disease and genetic testing, and used this experience to create the content of the leaflets. According to the project researcher Celine Lewis, there were major differences in the prevailing situations both between and within the seven countries initially surveyed. 'In some cases a combination of patient letters and pre-written leaflets were provided to patients and families during the genetic consultation, in others one or the other. However, no country had a comprehensive or standardised approach. 'Furthermore, we found that there were great differences in the quality of written information provided in genetic clinics across Europe. Whilst the majority of the material we assessed provided information about the condition being tested for, less than a quarter provided information on the psychological and social consequences of genetic testing, and only half provided details concerning where to access additional information and support,' she added. The partners in the project approached Patient Interest Groups for comment. According to Ms Lewis they all voiced a common concern that whilst the benefits of genetic tests were usually covered, the risks were either not adequately explained or not covered at all. EuroGentest also found that the pre-written materials were far more comprehensive in discussing the key issues than personal letters were, and this was the impetus for developing pre-written information leaflets for use across the EU. 'This information is designed to be used alongside the discussions patients and families have with a genetic specialist,' she concluded. The leaflets are freely available in English but will soon exist in the all the main languages of the EU.