The utilization of digital technologies in medical care raises ethical questions that have yet to be satisfactorily addressed. Conversely, digital technologies and artificial intelligence (AI) open up new possibilities for processes to become more patient-centered and personalized. In the context of our ELSI (Ethical, Legal, Social Implications) project, the interdisciplinary research group is engaged in the development of best-practice solutions for ethical, legal and psychosocial issues related to the digital platform dVP_FAM and beyond.

Topics of the ELSI research group

One focus of our ELSI research group is the legally established ‘right not to know’, which plays an important role for those affected with regard to protection from possible emotional distress caused by the knowledge of an increased risk of illness and the freedom to shape their own lives. Another focus of the ELSI research group is informed consent for genetic testing. Consent forms have increased in length and complexity in recent years. From the patient’s perspective, there is an urgent need to make the consent process more patient-friendly.

First results

As part of the ELSI-project, we conducted a cross-sectional study (‘ELSI-PAT’) in 2023 to investigate the subjective meaning of the right not to know and the patient’s experience of the complex consent process to genetic testing in the context of hereditary breast and ovarian cancer. The results show that the right not to know has cognitive, emotional and action-based facets, which should be taken into account in genetic counseling. We were also able to show that various aspects that are generally included in consent forms differ in their relevance for patients. The findings provide a basis for the development of alternative consent forms that are concise, comprehensible and legally sound, thereby supporting an informed decision.

The research group

The interdisciplinary team is formed by members from various disciplines, including medicine, psychology, law, public health, human factors and ergonomics, and patient advocacy:

• Prof. Dr. Friederike Kendel, Charité – Universitätsmedizin Berlin
• Dr. Sven Asmussen, LL.M. (University of Chicago), Humboldt Universität zu Berlin
• Nicolas Straub, Humboldt Universität zu Berlin
• PD Dr. Christoph Kowalski, German Cancer Society (Deutsche Krebsgesellschaft e.V.)
• Stephanie Stegen, BRCA-Network e.V.
• Prof. Dr. Dorothee Speiser, Charité – Universitätsmedizin Berlin
• Prof. Dr. Markus Feufel, Technische Universität Berlin
• M.Sc. Katharina Klein, Charité – Universitätsmedizin Berlin, & German Cancer Society (Deutsche Krebsgesellschaft e.V.)
• M.Sc. Paula Thomas, Charité – Universitätsmedizin Berlin