Asking questions from the doctor
Clinical geneticists offer information and discuss very complex issues with people who have or are at risk of having a child affected with a genetic disease. Many aspects of the appointment will involve areas that are scientifically complicated and therefore, you should not be embarrassed about asking for more information or explanations. Clinical geneticists across the world are used to this and in this clinic we will be happy to explain again aspects that are difficult to understand.
Clinical genetics is based on the absolute principle that the information that an individual or family give will be treated with confidentiality. It will not be discussed with any other family members or medical professionals without your knowledge and consent. The medical records and photographs are stored separately and safely and only available to the doctor looking after you.
This means that the clinical geneticist looking after you will try to help you come to a decision about what you/ your family should do regarding difficult decisions. These decisions may include deciding whether to have another pregnancy that may also be affected with a genetic disease or to have genetic testing performed (e.g. to have a carrier test to find out if you could pass a genetic disease to your child or whether to test your unborn child). Clinical geneticists across the world have adopted this position as we know that the decision that one person makes and is comfortable with is often different from that made by their own brother or sister. Decisions that people make vary according to many factors such as their own life experience, religious beliefs, financial position and family circumstances among others. There are often no correct or wrong decisions; only what works best for you and your family and clinical geneticists are able to help you to decide on this.