Scientists from the interdisciplinary EURAT group in Heidelberg have for the first time examined the ethical and legal aspects of how to deal with additional findings from genetic diagnostics in minors. In a recently published statement, they categorize possible additional findings and derive practical recommendations for informing families. EURAT also provides an information brochure for those affected.
The National Center for Tumor Diseases (NCT) Heidelberg is a joint institution of the German Cancer Research Center (DKFZ) and Heidelberg University Hospital (UKHD).
Until a few years ago, genome-wide examinations were a very rarely used method. Today, it has almost become the standard, from which many patients benefit. Steady progress in sequencing technology and falling costs make it possible to comprehensively analyze the entire genome not only in studies, but also in human genetic diagnostics. Genetic information holds great potential, particularly in the case of oncological and rare diseases. With their help, doctors can make faster and more precise diagnoses and often treat the diseases in a targeted manner.
At the same time, the comprehensive genetic findings pose a challenge. The large amount of data increases the probability that, in addition to the disease-relevant information originally sought, the primary findings, doctors will also discover genetic changes that may also be relevant to health - so-called additional findings.
The Heidelberg group EURAT has investigated this area of tension for additional genetic findings in minors. EURAT stands for Ethical and Legal Aspects of Translational Medicine. The interdisciplinary group includes scientists from the National Center for Tumor Diseases (NCT) Heidelberg, the Heidelberg University Hospital (UKHD), the German Cancer Research Center (DKFZ), the Heidelberg University, the Hopp Children's Tumor Center Heidelberg (KiTZ) and the University of Hamburg.
Eva Winkler, Managing Director at the NCT Heidelberg and Head of the Translational Medical Ethics Section at the UKHD, is the spokesperson for the project group. She says: "Until now, it was unclear which additional findings from studies should be reported back and how this can be explained, especially when it comes to findings from minors. This is where our statement comes in and for the first time provides recommendations on which categories of findings should be offered."
EURAT's recommendations are based on legal and ethical analyses. They are intended to help establish an adequate information and consent process. This will reduce the likelihood of conflicts when doctors identify additional genetic findings in minors.
An ethical challenge exists, for example, with findings that only become relevant in the child's adulthood and where the question arises as to whether these findings should be communicated to the parents now. Other additional findings, on the other hand, require rapid treatment measures. In addition, siblings or other family members may be affected by additional findings. It is also important for the procedure whether the diseases to be expected on the basis of the additional findings are basically treatable. In its statement, the EURAT Group therefore distinguishes between five different categories of additional findings and derives differentiated recommendations.
For example, additional findings that can avert immediate danger should always be communicated to the parents in order to protect the child's welfare, without them being able to refuse. On the other hand, if there is no imminent danger to life and limb, the child's right to decide whether to provide feedback should not be ignored. The child exercises this right on behalf of their parents.
If no medical benefit is apparent from the feedback and the disease associated with the additional findings only occurs in adulthood, additional findings should not be offered to parents for feedback during the consent process. For minors who are classified as capable of giving consent, the recommendation is that they should in principle be allowed to receive or refuse all additional findings.
In addition to the recommendations of the statement, EURAT provides an information brochure for parents and affected persons as well as text modules for the information and consent process, which takes into account possible additional genetic findings in minors.
The EURAT statement is available for download at the following link: https://journals.ub.uni-heidelberg.de/index.php/forum-mk/issue/view/5962
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The National Center for Tumor Diseases (NCT) Heidelberg
The National Center for Tumor Diseases (NCT) Heidelberg is a joint institution of the German Cancer Research Center, Heidelberg University Hospital and German Cancer Aid. The NCT's goal is to link promising approaches from cancer research with patient care from diagnosis to treatment, aftercare and prevention. The interdisciplinary tumor outpatient clinic is the central element of the NCT. Here the patients benefit from an individual treatment plan prepared in a timely manner in interdisciplinary expert rounds, the so-called tumor boards. Participation in clinical studies provides access to innovative therapies. The NCT thereby acts as a pioneering platform that translates novel research results from the laboratory into clinical practice. The NCT cooperates with self-help groups and supports them in their work. The pediatric oncologists at the KiTZ work together in joint structures with the NCT Heidelberg.
German Cancer Research Center (DKFZ)
With more than 3,000 employees, the German Cancer Research Center (Deutsches Krebsforschungszentrum, DKFZ) is Germany’s largest biomedical research institute. DKFZ scientists identify cancer risk factors, investigate how cancer progresses and develop new cancer prevention strategies. They are also developing new methods to diagnose tumors more precisely and treat cancer patients more successfully. The DKFZ's Cancer Information Service (KID) provides patients, interested citizens and experts with individual answers to questions relating to cancer.
To transfer promising approaches from cancer research to the clinic and thus improve the prognosis of cancer patients, the DKFZ cooperates with excellent research institutions and university hospitals throughout Germany:
- National Center for Tumor Diseases (NCT, 6 sites)
- German Cancer Consortium (DKTK, 8 sites)
- Hopp Children's Cancer Center (KiTZ) Heidelberg
- Helmholtz Institute for Translational Oncology (HI-TRON Mainz) - A Helmholtz Institute of the DKFZ
- DKFZ-Hector Cancer Institute at the University Medical Center Mannheim
- National Cancer Prevention Center (jointly with German Cancer Aid)
The DKFZ is 90 percent financed by the Federal Ministry of Education and Research and 10 percent by the state of Baden-Württemberg. The DKFZ is a member of the Helmholtz Association of German Research Centers.
Heidelberg University Hospital and Faculty of Medicine: Internationally Renowned Patient Care, Research and Teaching
Heidelberg University Hospital (Universitätsklinikum Heidelberg, UKHD) is one of the largest and most prestigious medical centers in Germany. The Medical Faculty of Heidelberg University (Medizinische Fakultät Heidelberg, MFHD) belongs to the internationally renowned biomedical research institutions in Europe. Both institutions have the common goal of developing new therapies and implementing them rapidly for patients. Heidelberg University Hospital and the Medical Faculty of Heidelberg University employs around 14.500 employees and is committed to providing trainings and qualifications. Every year, around 86,000 patients and more than 1.100.000 outpatient cases are treated in more than 50 clinical departments with almost 2.500 beds. Together with the German Cancer Research Center (Deutsches Krebsforschungszentrum, DKFZ) and the German Cancer Aid, the UKHD established the first National Center for Tumor Diseases (NCT) in Heidelberg. The goal is to provide care at the highest level as an oncology center of excellence and to rapidly transfer promising approaches from cancer research to the hospital. In addition, the UKHD operates in partnership with the DKFZ and the University of Heidelberg the Hopp Children’s Cancer center Heidelberg (KiTZ), a unique and nationally known therapy and research center for oncological and hematological diseases in children and adolescents. The Heidelberg Curriculum Medicinale (HeiCuMed) is one of the top medical training programs in Germany. Currently, there are about 4.000 future physicians studying in Heidelberg.