Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

EuroGentest publishes genetic testing patient information leaflets

02.05.2007
Having conducted the first major survey of the quality of current written patient information across the EU, EuroGentest has published a series of 11 patient information leaflets on the main topics in genetic disease and genetic testing.

Endorsed by Patient Information Groups across Europe, the leaflets are already in English, and are currently being translated into Polish, Romanian and Italian, a process which will eventually extend to all the main EU languages. The leaflets will be freely available throughout genetic clinics across the EU as well as through patient groups and other relevant bodies. The leaflets follow the publciation last month of the first of another series of EuroGentest intiated guides to patient rights.

According to project researcher Celine Lewis, there were major differences in the prevailing situations both between and within the 7 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 asessed 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.

When we approached Patient Interest Groups for comment, 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. This was also one of the major findings during the assessment. Another major finding was that 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. Using the resources of the EuroGentest network and consulting with all major stakeholders, we have developed a series of 11 leaflets for patients and families about Genetic Inheritance Patterns, Chromosome Problems, Genetic Testing and Information About Your Genetic Appointment.

There is also a Frequently Asked Questions leaflet of use to patients and families who will be speaking to a specialist about genetic testing, and a detailed Genetic Glossary. This information is designed to be used alongside the discussions patients and families have with a genetic specialist.”

The leaflets can be downloaded from the EuroGentest website – www.eurogentest.org

Richard Hayhurst | alfa
Further information:
http://www.eurogentest.org

More articles from Health and Medicine:

nachricht One gene closer to regenerative therapy for muscular disorders
01.06.2017 | Cincinnati Children's Hospital Medical Center

nachricht The gut microbiota plays a key role in treatment with classic diabetes medication
01.06.2017 | University of Gothenburg

All articles from Health and Medicine >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Climate satellite: Tracking methane with robust laser technology

Heatwaves in the Arctic, longer periods of vegetation in Europe, severe floods in West Africa – starting in 2021, scientists want to explore the emissions of the greenhouse gas methane with the German-French satellite MERLIN. This is made possible by a new robust laser system of the Fraunhofer Institute for Laser Technology ILT in Aachen, which achieves unprecedented measurement accuracy.

Methane is primarily the result of the decomposition of organic matter. The gas has a 25 times greater warming potential than carbon dioxide, but is not as...

Im Focus: How protons move through a fuel cell

Hydrogen is regarded as the energy source of the future: It is produced with solar power and can be used to generate heat and electricity in fuel cells. Empa researchers have now succeeded in decoding the movement of hydrogen ions in crystals – a key step towards more efficient energy conversion in the hydrogen industry of tomorrow.

As charge carriers, electrons and ions play the leading role in electrochemical energy storage devices and converters such as batteries and fuel cells. Proton...

Im Focus: A unique data centre for cosmological simulations

Scientists from the Excellence Cluster Universe at the Ludwig-Maximilians-Universität Munich have establised "Cosmowebportal", a unique data centre for cosmological simulations located at the Leibniz Supercomputing Centre (LRZ) of the Bavarian Academy of Sciences. The complete results of a series of large hydrodynamical cosmological simulations are available, with data volumes typically exceeding several hundred terabytes. Scientists worldwide can interactively explore these complex simulations via a web interface and directly access the results.

With current telescopes, scientists can observe our Universe’s galaxies and galaxy clusters and their distribution along an invisible cosmic web. From the...

Im Focus: Scientists develop molecular thermometer for contactless measurement using infrared light

Temperature measurements possible even on the smallest scale / Molecular ruby for use in material sciences, biology, and medicine

Chemists at Johannes Gutenberg University Mainz (JGU) in cooperation with researchers of the German Federal Institute for Materials Research and Testing (BAM)...

Im Focus: Optoelectronic Inline Measurement – Accurate to the Nanometer

Germany counts high-precision manufacturing processes among its advantages as a location. It’s not just the aerospace and automotive industries that require almost waste-free, high-precision manufacturing to provide an efficient way of testing the shape and orientation tolerances of products. Since current inline measurement technology not yet provides the required accuracy, the Fraunhofer Institute for Laser Technology ILT is collaborating with four renowned industry partners in the INSPIRE project to develop inline sensors with a new accuracy class. Funded by the German Federal Ministry of Education and Research (BMBF), the project is scheduled to run until the end of 2019.

New Manufacturing Technologies for New Products

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Plants are networkers

19.06.2017 | Event News

Digital Survival Training for Executives

13.06.2017 | Event News

Global Learning Council Summit 2017

13.06.2017 | Event News

 
Latest News

A new technique isolates neuronal activity during memory consolidation

22.06.2017 | Life Sciences

Plant inspiration could lead to flexible electronics

22.06.2017 | Materials Sciences

A rhodium-based catalyst for making organosilicon using less precious metal

22.06.2017 | Materials Sciences

VideoLinks
B2B-VideoLinks
More VideoLinks >>>