GenoPerspektiv – Dealing With Genomic High-Throughput Data: The Rerspectives of Clinical Practice, Ethics, Law, and Biomedical Informatics
Department of Medical Ethics and History of Medicine
Funding: Bundesministerium für Bildung und Forschung (BMBF)
Duration: 2014-2017
Carried out by:
- Prof. Dr. Mark Schweda
- Alexander Urban, M.A.
Summary
The clinical implementation of genomic high-throughput technologies raises a variety of questions, some of which are new to medical ethics. In particular, the collection, management and interpretation of large amounts of sensitive genomic data poses a challenge to the established practice of informed consent, so new concepts and approaches may need to be considered.
The medical-ethical subproject investigates the ethical implications of the use of genomic high-throughput technologies, especially with regard to the conventional forms of patient education and informed consent. The perspectives of personally affected persons, participating professional groups and the broader public will be systematically included in the ethical analysis with the help of qualitative methods of empirical social research. Using partially standardized guidelines, interviews will be conducted with patients, their relatives and employees of the health care professions involved in order to examine the moral attitudes, needs and fears of the groups of people involved. The results will be used to develop practical, information technology and legal concepts in the other subprojects, which will then be discussed and evaluated in focus groups with medical laypersons. They will also contribute to the empirical information and theoretical development of the medical-ethical discourse, serve to formulate context-sensitive ethical recommendations for clinical practice, and promote a well-informed and reflected public debate about them.
Presentations
- Schweda, M., Inclusive deliberation on future healthcare. The role of patients and the public in the debate on medical high-throughput technologies. Tagung „Next-Generation Medicine: Ethical, Social, Legal and Technological Questions of Genomic High-Throughput Sequencing in the Clinic“ (25.–26.07.2017) in Göttingen.
- Urban, A., Schweda, M., What should you do with this kind of information? Expert and lay perspectives on the utility of genomic high-throughput sequencing (26.07.2017) auf der Tagung „Next-Generation Medicine: Ethical, Social, Legal and Technological Questions of Genomic High-Throughput Sequencing in the Clinic“ (25.–26.07.2017) in Göttingen.
- Schweda, M., Ethical aspects of data science applications (20.07.2017) auf der Data Science Summer-School (10.–21.07.2017) an der Universität Göttingen.
- Urban, A., Clinical Implementation of Genomic High-Throughput Sequencing: Perspectives Of Experts And Patients in Germany. International Conference "30 Years of Bioethics", European Association Of Centres Of Medical Ethics (EACME), 08.-10. September 2016, Katholische Universität Leuven, Belgien.
- Urban, A., Social Impact of Genomic High-Throughput Data: Moral Perspectives and Self-Expression in the Era of Next Generation Sequencing. Interdisciplinary Winter School "Integration and Translation in Systems Medicine", 01.-05. Februar 2016, am Forschungsschwerpunkt Biotechnik, Gesellschaft und Umwelt (BIOGUM), Universität Hamburg.
- Urban, A., & Schweda, M., Zum Umgang mit genomischen Hochdurchsatzdaten: Moralische Perspektiven von Experten. Erste Ergebnisse einer qualitativen Interviewstudie. Workshop der ELSA-Projekte am 27. April 2016 in Berlin.
- Urban, A. & Schweda, M., Zum Nutzen genomischer Hochdurchsatztechnologien in der Klinik: Perspektiven von Experten und Betroffenen. Workshop „Next-Generation Medicine: Ethical, Social, Legal and Technological Questions of Genomic High-Throughput Sequencing in the Clinic.” am 14. / 15. November 2016 in Göttingen.
- Urban, A. & Schaper, M., Lay Perspectives on Genomic Sequencing in Clinical and Direct-to-Consumer Contexts in Germany. Posterbeitrag zum Workshop des GenoPerspektiv-Konsortiums "Next Generation Medicine - Ethical, Legal and Technological Questions of Genomic-High Throughput Sequencing in the Clinic", 14.-15. November 2016, Universitätsmedizin Göttingen.
