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So rare we need to hunt for them: reframing the ethical debate on incidental findings

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.

In: Genome Medicine, 7 (2015), Nr. 83. pp. 1-7. ISSN 1756-994X

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Download (420kB) | Lizenz: Creative Commons LizenzvertragSo rare we need to hunt for them: reframing the ethical debate on incidental findings by 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. underlies the terms of Creative Commons Attribution 3.0 Deutschland

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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.

Item Type: Article
Journal or Publication Title: Genome Medicine
Volume: 7
Number: 83
Publisher: BioMed Central
Place of Publication: London
Date Deposited: 12 Jan 2016 14:34
Date: 2015
ISSN: 1756-994X
Page Range: pp. 1-7
Faculties / Institutes: Theologische Fakultät > Theologisches Seminar
The Faculty of Bio Sciences > Institute of Pharmacy and Molecular Biotechnology
Service facilities > German Cancer Research Center (DKFZ)
Medizinische Fakultät Heidelberg > Medizinische Universitäts-Klinik und Poliklinik
Medizinische Fakultät Heidelberg > Institut für Humangenetik
Subjects: 200 Religion
570 Life sciences
610 Medical sciences Medicine
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