Patients, Public and policy

Patients, Public and Policy

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On these pages you can find general information on genetic testing and genetic services for patients, their family and for the general public.

Because it is important that new guidelines and recommendations find their way into European standards and regulations, EuroGentest is also actively involved in policy work.


Patient leaflets

EuroGentest has developed a series of 15 leaflets to provide general information for patients and families about genetics and genetic testing.

The leaflets can either be downloaded and printed out, or you can look at the information online by choosing the HTML version.

Select your language (more than 30 languages are available!):

NEW The Council of Europe has developed a general leaflet on Genetic Tests for Health Purposes with the support of Eurogentest and the European Society of Human Genetics (click here).

Two new leaflets have been created on non-invasive prenatal testing (NIPT): One generic leaflet (Non-invasive prenatal diagnosis for single gene disorders) and one more specific (Non-invasive prenatal testing: a new test for Down syndrome).


Image Policy IconEuroGentest is concerned with the coordination of policy work and surveys ‘hot’ topics in laboratory and community genetics.

This is done in concordance with the professional societies and in dialogue with the European and national organizations and policy makers.

Direct-to-consumer genetic testing

When a test is offered to patients through a private company instead of health care providers, this test is called a direct-to-consumer test (DTC).

Although this makes genetic testing available for a broad audience, one must be aware of the risks and limitations of these tests when offered outside of health care.

Click here for more information on DTC.

NEW EuroGentest developed a simple tool for clinicians that will help them to understand and advise patients about the many issues inherent in the use of such services (click here . Individuals considering using a DTC test may also find this tool useful.

Patient rights in the EU

A series of reports of genetic patient's rights in the EU highlights major variations and anomalies across the community.

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Find a support group / patient organization / professionals

Find a genetic test or lab

OrphanetOrphanet Logo Exit this website Formal partnership with EuroGentest Download PDF Document

OrphanetExit this website is a database of rare diseases, which was designed to assist in diagnosing and treating rare diseases, as well as to further clinical research. It has been selected to serve as the central database of the EuroGentest network.

Find information on a genetic diseases, genetic tests, quality assurance (QAu) for laboratories across Europe.

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