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 New malaria analysis method reveals disease severity in minutes
14.08.2017 | University of British Columbia

nachricht New type of blood cells work as indicators of autoimmunity
14.08.2017 | Instituto de Medicina Molecular

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: Exotic quantum states made from light: Physicists create optical “wells” for a super-photon

Physicists at the University of Bonn have managed to create optical hollows and more complex patterns into which the light of a Bose-Einstein condensate flows. The creation of such highly low-loss structures for light is a prerequisite for complex light circuits, such as for quantum information processing for a new generation of computers. The researchers are now presenting their results in the journal Nature Photonics.

Light particles (photons) occur as tiny, indivisible portions. Many thousands of these light portions can be merged to form a single super-photon if they are...

Im Focus: Circular RNA linked to brain function

For the first time, scientists have shown that circular RNA is linked to brain function. When a RNA molecule called Cdr1as was deleted from the genome of mice, the animals had problems filtering out unnecessary information – like patients suffering from neuropsychiatric disorders.

While hundreds of circular RNAs (circRNAs) are abundant in mammalian brains, one big question has remained unanswered: What are they actually good for? In the...

Im Focus: RAVAN CubeSat measures Earth's outgoing energy

An experimental small satellite has successfully collected and delivered data on a key measurement for predicting changes in Earth's climate.

The Radiometer Assessment using Vertically Aligned Nanotubes (RAVAN) CubeSat was launched into low-Earth orbit on Nov. 11, 2016, in order to test new...

Im Focus: Scientists shine new light on the “other high temperature superconductor”

A study led by scientists of the Max Planck Institute for the Structure and Dynamics of Matter (MPSD) at the Center for Free-Electron Laser Science in Hamburg presents evidence of the coexistence of superconductivity and “charge-density-waves” in compounds of the poorly-studied family of bismuthates. This observation opens up new perspectives for a deeper understanding of the phenomenon of high-temperature superconductivity, a topic which is at the core of condensed matter research since more than 30 years. The paper by Nicoletti et al has been published in the PNAS.

Since the beginning of the 20th century, superconductivity had been observed in some metals at temperatures only a few degrees above the absolute zero (minus...

Im Focus: Scientists improve forecast of increasing hazard on Ecuadorian volcano

Researchers from the University of Miami (UM) Rosenstiel School of Marine and Atmospheric Science, the Italian Space Agency (ASI), and the Instituto Geofisico--Escuela Politecnica Nacional (IGEPN) of Ecuador, showed an increasing volcanic danger on Cotopaxi in Ecuador using a powerful technique known as Interferometric Synthetic Aperture Radar (InSAR).

The Andes region in which Cotopaxi volcano is located is known to contain some of the world's most serious volcanic hazard. A mid- to large-size eruption has...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Call for Papers – ICNFT 2018, 5th International Conference on New Forming Technology

16.08.2017 | Event News

Sustainability is the business model of tomorrow

04.08.2017 | Event News

Clash of Realities 2017: Registration now open. International Conference at TH Köln

26.07.2017 | Event News

 
Latest News

New thruster design increases efficiency for future spaceflight

16.08.2017 | Physics and Astronomy

Transporting spin: A graphene and boron nitride heterostructure creates large spin signals

16.08.2017 | Materials Sciences

A new method for the 3-D printing of living tissues

16.08.2017 | Interdisciplinary Research

VideoLinks
B2B-VideoLinks
More VideoLinks >>>