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
Routing gene therapy directly into the brain
07.12.2017 | Boston Children's Hospital
New Hope for Cancer Therapies: Targeted Monitoring may help Improve Tumor Treatment
01.12.2017 | Berliner Institut für Gesundheitsforschung / Berlin Institute of Health (BIH)
MPQ scientists achieve long storage times for photonic quantum bits which break the lower bound for direct teleportation in a global quantum network.
Concerning the development of quantum memories for the realization of global quantum networks, scientists of the Quantum Dynamics Division led by Professor...
Researchers have developed a water cloaking concept based on electromagnetic forces that could eliminate an object's wake, greatly reducing its drag while...
Tiny pores at a cell's entryway act as miniature bouncers, letting in some electrically charged atoms--ions--but blocking others. Operating as exquisitely sensitive filters, these "ion channels" play a critical role in biological functions such as muscle contraction and the firing of brain cells.
To rapidly transport the right ions through the cell membrane, the tiny channels rely on a complex interplay between the ions and surrounding molecules,...
The miniaturization of the current technology of storage media is hindered by fundamental limits of quantum mechanics. A new approach consists in using so-called spin-crossover molecules as the smallest possible storage unit. Similar to normal hard drives, these special molecules can save information via their magnetic state. A research team from Kiel University has now managed to successfully place a new class of spin-crossover molecules onto a surface and to improve the molecule’s storage capacity. The storage density of conventional hard drives could therefore theoretically be increased by more than one hundred fold. The study has been published in the scientific journal Nano Letters.
Over the past few years, the building blocks of storage media have gotten ever smaller. But further miniaturization of the current technology is hindered by...
With innovative experiments, researchers at the Helmholtz-Zentrums Geesthacht and the Technical University Hamburg unravel why tiny metallic structures are extremely strong
Light-weight and simultaneously strong – porous metallic nanomaterials promise interesting applications as, for instance, for future aeroplanes with enhanced...
11.12.2017 | Event News
08.12.2017 | Event News
07.12.2017 | Event News
12.12.2017 | Physics and Astronomy
12.12.2017 | Earth Sciences
12.12.2017 | Power and Electrical Engineering