eprintid: 19448 rev_number: 22 eprint_status: archive userid: 1589 dir: disk0/00/01/94/48 datestamp: 2016-01-12 14:34:38 lastmod: 2024-05-01 14:20:32 status_changed: 2016-01-12 14:34:38 type: article metadata_visibility: show creators_name: Schuol, Sebastian creators_name: Schickhardt, Christoph creators_name: Wiemann, Stefan creators_name: Bartram, Claus R. creators_name: Tanner, Klaus creators_name: Eils, Roland creators_name: Meder, Benjamin creators_name: Richter, Daniela creators_name: Glimm, Hanno creators_name: von Kalle, Christof creators_name: Winkler, Eva C. title: So rare we need to hunt for them: reframing the ethical debate on incidental findings subjects: 200 subjects: 570 subjects: 610 divisions: 10200 divisions: 160100 divisions: 850300 divisions: 910100 divisions: 911500 abstract: Incidental findings are the subject of intense ethical debate in medical genomic research. Every human genome contains a number of potentially disease-causing alterations that may be detected during comprehensive genetic analyses to investigate a specific condition. Yet available evidence shows that the frequency of incidental findings in research is much lower than expected. In this Opinion, we argue that the reason for the low level of incidental findings is that the filtering techniques and methods that are applied during the routine handling of genomic data remove these alterations. As incidental findings are systematically filtered out, it is now time to evaluate whether the ethical debate is focused on the right issues. We conclude that the key question is whether to deliberately target and search for disease-causing variations outside the indication that has originally led to the genetic analysis, for instance by using positive lists and algorithms. date: 2015 publisher: BioMed Central id_scheme: DOI ppn_swb: 1656477246 own_urn: urn:nbn:de:bsz:16-heidok-194480 language: eng bibsort: SCHUOLSEBASORAREWENE2015 full_text_status: public publication: Genome Medicine volume: 7 number: 83 place_of_pub: London pagerange: 1-7 issn: 1756-994X citation: Schuol, Sebastian ; Schickhardt, Christoph ; Wiemann, Stefan ; Bartram, Claus R. ; Tanner, Klaus ; Eils, Roland ; Meder, Benjamin ; Richter, Daniela ; Glimm, Hanno ; von Kalle, Christof ; Winkler, Eva C. (2015) So rare we need to hunt for them: reframing the ethical debate on incidental findings. Genome Medicine, 7 (83). pp. 1-7. ISSN 1756-994X document_url: https://archiv.ub.uni-heidelberg.de/volltextserver/19448/1/13073_2015_Article_198.pdf