Consent form For genetic counselling of you or other family members Instructions May we request information from … . Information from medical records, laboratory analyses and stored tissue etc.: In order to make the best possible risk assessment in the family, we need information about diagnoses or other aspects of the disease. May we provide information to… The Danish Pedigree Database: The Danish Pedigree Database is a secured database which contains Social Security No., names and relevant diagnose(s) of you and your relatives. The consent allows information about you in the pedigree database to be shared between Danish Departments of Clinical Genetic in relation to a specific genetic investigation in your family. Information in the Danish Pedigree Database is treated confidentially among the Departments of Clinical Genetic. Region Midtjylland is the data manager in relation to the pedigree database. Only staffs from Departments of Clinical Genetic have access to the information. The consent may be withdrawn until the information is stored in the Danish Pedigree Database. Departments of Clinical Genetic: For the genetic counselling of you and your family, we need to collect and store health information about you. If a family member is seeking genetic counselling from us at a later point, we would like permission to use the information without having to retrieve them again. Other Departments of Clinical Genetic can also contact us. This happens if a family member has requested genetic counselling there. In these cases, we will ask you for permission to send your information to the relevant department. Registers: There are a number of registers that may be relevant to you in relation to the genetic counselling. The registers serve as an aid in the daily work of both the Departments of Clinical Genetic and the departments responsible for control programs for specific diseases and are basis for research. Danish registers for hereditary cancer : • The HNPCC Registry ( H ereditary N on P olyposis C olorectal C ancer) - in which families with hereditary colon cancer are registered (www.HNPCC.dk). • The DBCG Registry ( D anish B reast C ancer C ooperative G roup) - in which families with hereditary breast cancer are registered (www.dbcg.dk). • The FAP Registry ( F amilial A denomatous P olyposis) - in which families with familial polyposis – a special kind of hereditary colon cancer – are registered. Other registers of different rare diseases : There are a number of registers that may prove relevant reporting to. At the moment it concerns Von Hippel-Lindau, Huntington's disease, cystic fibrosis and porphyria. May we contact you? For instance, in case a relative and not yourself has started the genetic investigation of your family, we would like to contact you: - If we need more information. - If we consider that there may be a hereditary condition or hereditary inclination to develop cancer in your family, and we believe it may be of importance to you. Please note that you can withdraw your consent at any time if you do not wish to participate in the genetic investigation of your family. If so, please let us know. You are always welcome to contact us if you have any questions.
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