Genetic Counselling – Information for Patients and Families

1.) Why should I seek genetic counselling?

You may benefit from genetic counselling if:

• There is a known genetic disorder, abnormality or disability running in your family. You wish to be informed on the risk of recurrence for you and/or your children.
  (E.g. cystic fibrosis, metabolic disorder, cancer etc.)

• You have a child with a disorder that might have a genetic cause. You wish to learn more about diagnosis (cause), prognosis (expected development) and treatment (intervention options).
  (E.g. mental retardation, developmental delay, congenital heart defect, epilepsy, etc.)

• You are pregnant and your gynaecologist has identified clinical problems/abnormal test results. We will explain the implications of such findings and will discuss with you additional tests that may be available. Maybe you are considering whether to terminate or continue with the pregnancy. If you wish, we will try to put you in touch with other patients who have gone through similar experiences.

2.) What happens during a genetic consultation session?

Genetic consultation is

• voluntary: but strongly advised before any genetic test is performed;

• confidential: no information will be disclosed without your consent;

• non-directive: we usually provide you only with the amount of information you wish to receive. You are actively involved in the decision-making process for genetic testing.

A genetic counselling session usually lasts for about 45 to 90 minutes. You will have enough time to ask all the questions that are on your mind! You may bring along relatives or friends. The general procedure is as follows:

• Your concerns and questions: It is also your decision what topics will be discussed.

• Overview: We explain the topics that can be addressed in the session.

• Family tree: We will draw a family tree; this will also help us to determine the underlying hereditary pattern of the suspected disorder.

• A physical examination and, if appropriate, photographs taken during the session, may deliver important findings that are helpful in diagnosis.

• If appropriate, we will recommend that you see a medical specialist (e.g. a neurologist or paediatrician) or we will organize a genetic test.

• If a genetic test is done, we will invite you to a second counselling session to discuss the test results with you.

• After the session, we will send you a written summary.
  There is no need for you to remember all details covered during the session!

3.) Expectations and reality – What you should know about genetic tests.

• There is no such thing as an „all-in-one“ test to rule out all potential genetic problems within a family.

• A genetic test will always provide information with regard to a specific question. To find out what particular kind of question you wish to ask is one of the aims of genetic counselling.

• Not all available tests are desirable or justified from an economic point of view. We will advise you in this regard.

• Before a genetic test is performed, we will ask you to complete a form to confirm that you wish the relevant test to be done. If appropriate, we will also ask you to sign other forms regarding the confidential treatment of photographs (see above) and test results.

4.) What we expect of you.

• Please keep your appointment or let us know as soon as possible if you are unable to keep it (phone: +49-221-47886811).

• If you do not speak or understand German well enough: Please let us know, we will then allow extra time for the counselling.
  Ideally, you will bring along your own interpreter. At your request, we can make arrangements for an interpreter to be present during the session, but in this case you should tell us at least one week in advance.

• Please bring copies of your medical records and findings that have been the reason for you to seek genetic counselling. You referring GP/family doctor will help you to obtain them.

• If you are insured under the German statutory health insurance scheme, please remember to bring a referral voucher ( Überweisungsschein), issued by your GP, (or a so-called Konsilschein, if you are an in-patient at the University Hospital of Cologne) since we need this document to settle accounts with the health insurance companies.

• Do not hesitate to contact us if you have any questions after the counselling (e.g. regarding the written summary). We welcome any feedback.

• If your address changes, please let us know, if possible in writing.

5.) For questions on genetic counselling, please contact:

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