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Guidelines for health professionals about genetic testing, counselling and research in Europe

YOU MAY FIND THE INFORMATION ON THIS PAGE USEFUL IF YOU ARE:

  • a health professional such as a doctor, nurse, or genetic counsellor, and have a patient who is considering taking a predictive or diagnostic test for a genetic disorder.
  • employed in genetic research and are talking to people who may be considering allowing samples of their biological material to be stored in a DNA bank and used in a a research study.

 

The information has been divided into sections for separate topics, containing information relevant to health professionals and researchers in different situations, such as those described above. Have a look at the topics at the bottom of this page and click on the links to take you straight there.

General information about genetic services around Europe, and links to national genetics networks can be found at the website for the European Society of Human Genetics, here

Similarly, the EuroGenTest project has devised a series of leaflets in a range of European languages, and which explain several key aspects of genetics and testing. You may wish to show these to any patients of yours who are considering taking a genetic test or are concerned about being affected by a genetic condition, and they can be found here

Topic Areas

  • Informed consent: how you can help individuals to make the best choices for them about genetic testing and DNA research.
  • DNA banking / biobanking: information about DNA banking around Europe, and guidelines for good practice concerning the collection and storage of personal biological material.
  • Gender and family: the different concerns and issues faced by men, women, and their families when considering takign a predictive or diagnostic genetic test.
  • Cultural and biological diversity: the concerns felt by groups and individuals from different or minority social and cultural backgrounds.
  • Access and benefit sharing: information to help you explain to people why it is worthwhile to take part in genetic research by donating biological samples to a DNA bank.