2024-2027.

The project is funded by the Deutsche Forschungsgemeinschaft (DFG).

Project number:?529272624.

This project proposes to explore the interplay of policies and socio-ethical considerations in the context of testing strategies for CF in Israel and Germany, two countries that are exemplary for adopting contrasting approaches to genetic testing. While CF screening and/or testing in Israel is offered pre-conceptionally and/or prenatally, in Germany it is part of newborn-screening (NBS). The decision when and how to test for CF provides a window into diverse and sometimes opposing normative considerations and policies.

Situated at the interface between sociology, bioethics and law/policies, the aim of this empirical bioethics project is to gain in-depth understanding of the contexts that shape national policies and public perspectives, and of the impact of such policies on key-stakeholders (professionals, parents and patients).

We are currently recruiting parents of children with CF, adult CF patients, and professionals (geneticists, ob-gyns, CF practitioners, bioethicists, representatives of CF organizations, and policymakers) for qualitative interviews (45-60 min), online via Zoom or in person.

If you would like to participate in our study and share your experience with us, please get in touch ( ruth.horn@med.uni-augsburg.de; leoni.czisch@student.uni-augsburg.de; tamar.nov.klaiman@med.uni-augsburg.de).

Ethics approvals for the study have been obtained from the Research Ethics Committee of the LMU Munich (Protocol-nr.: 24-0578) and the Human Subjects Research Committee at Ben-Gurion university of the Negev (M102-230724).

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