Eva Winkler, National Center for Tumour Diseases (NCT), Heidelberg, Germany
Thursday, April 7, 15:00 in the Large Operon, EMBL Heidelberg
Eva Winkler, National Center for Tumour Diseases (NCT), Heidelberg, Germany
Evolving science, evolving ethics - How best to address the ethical challenges of Next-Generation Sequencing
Abstract
The use of next generation sequencing not only holds promise for better understanding the molecular basis of disease and finding new targeted therapies but also raises several ethical and legal questions. The four main ethical and legal challenges are as follows: (1) the handling of additional or incidental findings stemming from whole genome sequencing in research contexts; (2) the compatibility and balancing of data protection and research that is based on broad data sharing; (3) the responsibility of researchers, particularly of non-physician researchers, working in the field of genome sequencing; and (4) the process of informing and asking patients or research subjects for informed consent to the sequencing of their genome. These four challenges are illustrated, results of ethical and empirical research on these questions presented and concrete solutions are proposed, as elaborated by the interdisciplinary Heidelberg EURAT project group.
Biography
Prof. Winkler is physician ethicist and head of the programme and research group “Ethics and Patient Oriented Care in Oncology” at the National Center of Tumor Diseases in Heidelberg (NCT-EPOC). She is also a board-certified internist working in Oncology in-and outpatient care for 15 years, attending of the Dept of Medical Oncology and is heading the Clinical Cancer Program for Neuroendocrine Tumors. She holds a Ph.D. in cancer research from the University of Heidelberg as well as a PHD in Medical and Healthcare Ethics from the University of Basel, Switzerland (summa cum laude). Before entering her PhD Program she was granted two fellowships - one in Medical Ethics at the Harvard Medical School, Division of Medical Ethics and one as a Faculty Fellow at the Center for Ethics and the Professions, Harvard University, Kennedy School of Government. Since 2013 she is project speaker for the interdisciplinary project “Ethical and Legal Aspects of Whole Genome Sequencing” (EURAT) in Heidelberg.