Subproject of PePPP ("Proteinfehlfaltung, ER-Stress und Proteindegradation – Entwicklung einer systematischen Pipeline für individualisierte Therapien bei erblichen Leber- und Pankreaserkrankungen"
| JProf. Dr. Dr. Sabine Salloch Institute of Ethics and History of Medicine University Medicine Greifswald Ellernholzstr. 1-2 17487 Greifswald Phone: +49 3834/86-5780, Fax: +49 3834/86-5782 E-Mail: sabine.salloch@med.uni-greifswald.de |
OA Dr. med. Peter Simon Department of Internal Medicine A University Medicine Greifswald Ferdinand-Sauerbruch-Straße 17475 Greifswald Phone: +49 3834 86-7230 E-Mail: peter.simon@med.uni-greifswald.de |
European Union, European Regional Development Fund, Exzellenzinitiative des Landes Mecklenburg-Vorpommern
Duration: 01.03.2017-29.02.2020
More and more patients have been diagnosed with chronic hereditary pancreatitis in the last years, not least because of improved diagnostics. Despite this increasing number of patients and the growing interest on the side of the patients, their relatives and the physicians research on social and normative aspects of chronic hereditary pancreatitis is widely missing so far.
In close collaboration with the patient self-help group “Deutsche Pankreashilfe e.V.“ the PePPP-subproject “Ethical aspects of patient self-help groups” investigates the perspectives of those who are affected by the disease (patients and relatives). Qualitative semi-structured interviews are used to elicit the “lived experience” of the disease but also further-reaching questions with respect to patient advocacy or the impact of the disease on family planning. The project also deals with normative issues such as the involvement of patient advocates in biomedical research, handling information about genetic predispositions and the social functions of patient self-help groups. Empirical-ethical analyses are performed against the background of concepts of health and disease and ethical approaches towards patient autonomy. The project not only aims at a reconstruction and normative evaluation of the social practice but, in addition, will further develop theoretical concepts in light of the empirical findings.
