Cystic Fibrosis (CF) is a progressive inherited disease. Due to improved medical treatments and care, people with CF live into their 30s, 40s, and beyond. Genetic screening and/or testing for CF can be done pre-conceptionally (on individuals/parents), prenatally (on the foetus), or postnatally (on the newborn). Testing policies vary across countries, reflecting their socio-cultural, historical, and political contexts, and give rise to practical and ethical questions as well as public discourses.

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).

This project involves policy research, conceptual analysis and comparative empirical research with professionals, parents and adult patients. The data generated will be analysed qualitatively, aiming to inform and benefit health-related policymaking.

Funded by: DFG (HO 7477/1-1)

 

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Ruth Horn (PI), University of Augsburg, GER
Aviad Raz (PI), Ben Gurion University of the Negev, IL
Tamar Nov-Klaiman (Researcher), University of Augsburg, GER
Meda Kuhn (Research Associate), Ben Gurion University of the Negev, IL
Leoni Czisch (Research Assissant), University of Augsburg, GER

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).