Information for patients

Please note the following procedure for making an appointment:

1. Please contact us either through the appointment request form or by phone (phone appointments available on Thursdays from 09:00 – 15:00 and Fridays from 09:00 – 12:00, Tel.: 0241 80-85572).
2. We will gather your information over the phone and inquire about the diagnoses made. We process your data exclusively in accordance with legal regulations (DSGVO). The data collected from you will be treated confidentially and not shared with third parties without your consent. The protection of your personal data is very important to us.
3. Send us relevant findings, doctor's letters, pathological reports, etc., preferably from all affected family members: Via email (humangenetikukaachende), fax (0241 80-82580), or by mail (Institut für Humangenetik und Genommedizin, Uniklinik RWTH Aachen, Pauwelsstraße 30, 52074 Aachen).
4. About a week after we receive the documents and they have been reviewed by doctors, please contact us again by phone. You can now schedule an appointment for a human genetic counseling session.
5. After that, we will send you the necessary forms, information about genetic counseling, and directions. Please return these forms to us before the planned counseling appointment.

For individuals with personal health concerns, a medical condition, family history of illnesses, or other reasons to believe they may carry a genetic risk, contacting a genetic counseling service is advisable. The core of genetic counseling is the conversation between the individual seeking advice and the consulting medical professionals. The goal of the counseling session is to contribute to a better understanding of the situation and assist in making responsible decisions about one's life and family planning. The decision regarding the application of specific diagnostic procedures, such as genetic testing, and the implications for family planning—occasionally including the termination of a pregnancy under legally recognized indications—remains the responsibility of the individual seeking advice.

During the counseling, we initially discuss the specific questions and then create a family pedigree spanning at least three generations. If possible, we verify reported illnesses and diagnoses, referring to medical reports. If necessary, we conduct or arrange examinations for family members. Specialized laboratory tests, such as molecular genetic testing, may be initiated as part of the counseling (often through blood sample collection). An initial counseling session typically lasts one to two hours, and depending on the counseling situation, multiple visits may be beneficial.

When it comes to joint family planning or the illness of a shared child, both partners should participate in the counseling session to include all family members in genetic investigations. Genetic counseling is concluded with a written report and, if applicable, a genetic test report for the individual seeking advice and the treating physicians. Records of genetic counseling are subject to medical documentation and confidentiality obligations and are treated with strict confidentiality.

In summary, genetic counseling may be beneficial for individuals, who:

• have an unclear (so-called rare) illness or malformation,
• have an affected child with a congenital malformation or unclear illness,
• have a hereditary disease in the family,
• have a tumor disease (especially a rare tumor, early onset of the disease, and/or other family members affected by a tumor),
• are related to their partner,
• have unfulfilled fertility wishes or multiple unclear miscarriages (at least two).

The genetic counseling is covered by health insurance. Individuals with statutory health insurance need a referral form issued by a general practitioner, pediatrician, gynecologist, internist, human geneticist, or neurologist.

For people with statutory health insurance:

In these information sheets you will find important information on genetic diagnostics for suspected colorectal cancer (HNPCC) or breast and ovarian cancer (HBOC). Please note that you or your family must fulfil at least one of the criteria listed in the relevant information sheet for the costs to be covered by your health insurance. If you are unclear about the terminology, you can contact your family doctor or oncologist.

Besonderheiten bei der Testung auf erblichen Darmkrebs (HNPCC):
Patienteninformation zur Diagnostik von HNPCC

Besonderheiten bei der Testung auf erblichen Brust- und Eierstockkrebs (HBOC):
Patienteninformation zur Diagnostik von HBOC

Medical research plays a central role in the development of new treatments, improvement of therapies, and exploration of the causes of diseases. Particularly in genetics, patient care and research are closely intertwined. For research beyond standard care, we require your consent.

Consent for a research project ensures that all participants, whether patients or subjects, are informed about the research process. Consents comply with legal requirements and ensure that research is conducted in accordance with applicable regulations.

Your consent to one or more research projects allows you to actively contribute to the advancement of medical science and make a contribution to the health of society. By supporting medical research and providing your consent, you contribute to expanding the boundaries of medical science and improving healthcare. Your participation is invaluable and can have a significant impact on the future of medical treatments. Explanatory information on the use of data for research purposes can be found in this video.

Quality: Our laboratory is accredited according to DIN EN ISO 15189, adhering to high-quality standards. With our quality management system, we continuously work towards improving our services. We appreciate your feedback, complaints, or concerns. Please contact our secretariat for assistance.

Genetic Diagnostic Law and Data Protection: We have implemented extensive measures to ensure that all legal requirements of the Genetic Diagnostic Law (GenDG) are followed in genetic testing. Additionally, the protection of your personal data is of utmost importance to us. Here is our patient information on data protection.

Implementation oft he IVDR (Declarations under Art. 5 (5) EU Regulation on in vitro diagnostic medical devices (EU) 2017/746 (IVDR) for in-house production of IVD in health institutions