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2013-07-16Zeitschriftenartikel DOI: 10.1002/humu.22370
Reflecting on Earlier Experiences with Unsolicited Findings: Points to Consider for Next-Generation Sequencing and Informed Consent in Diagnostics
dc.contributor.authorRigter, Tessel
dc.contributor.authorHenneman, Lidewij
dc.contributor.authorKristoffersson, Ulf
dc.contributor.authorHall, Alison
dc.contributor.authorYntema, Helger G.
dc.contributor.authorBorry, Pascal
dc.contributor.authorTönnies, Holger
dc.contributor.authorWaisfisz, Quinten
dc.contributor.authorElting, Mariet W.
dc.contributor.authorDondorp, Wybo J.
dc.contributor.authorCornel, Martina C.
dc.date.accessioned2018-05-07T17:04:56Z
dc.date.available2018-05-07T17:04:56Z
dc.date.created2013-10-16
dc.date.issued2013-07-16none
dc.identifier.otherhttp://edoc.rki.de/oa/articles/rePY8sIqCKIec/PDF/23bDHqmLK3kEo.pdf
dc.identifier.urihttp://edoc.rki.de/176904/1684
dc.description.abstractHigh-throughput nucleotide sequencing (often referred to as next-generation sequencing; NGS) is increasingly being chosen as a diagnostic tool for cases of expected but unresolved genetic origin. When exploring a higher number of genetic variants, there is a higher chance of detecting unsolicited findings. The consequential increased need for decisions on disclosure of these unsolicited findings poses a challenge for the informed consent procedure. This article discusses the ethical and practical dilemmas encountered when contemplating informed consent for NGS in diagnostics from a multidisciplinary point of view. By exploring recent similar experiences with unsolicited findings in other settings, an attempt is made to describe what can be learned so far for implementing NGS in standard genetic diagnostics. The article concludes with a set of points to consider in order to guide decision-making on the extent of return of results in relation to the mode of informed consent. We hereby aim to provide a sound basis for developing guidelines for optimizing the informed consent procedure.eng
dc.language.isoeng
dc.publisherRobert Koch-Institut
dc.subjecthigh-throughput nucleotide sequencingeng
dc.subjectincidental findingseng
dc.subjectunsolicited findingseng
dc.subjectdiagnosiseng
dc.subjectinformed consenteng
dc.subject.ddc610 Medizin
dc.titleReflecting on Earlier Experiences with Unsolicited Findings: Points to Consider for Next-Generation Sequencing and Informed Consent in Diagnostics
dc.typeperiodicalPart
dc.identifier.urnurn:nbn:de:0257-10033087
dc.identifier.doi10.1002/humu.22370
dc.identifier.doihttp://dx.doi.org/10.25646/1609
local.edoc.container-titleHuman Mutation
local.edoc.fp-subtypeArtikel
local.edoc.type-nameZeitschriftenartikel
local.edoc.container-typeperiodical
local.edoc.container-type-nameZeitschrift
local.edoc.container-urlhttp://onlinelibrary.wiley.com/doi/10.1002/humu.22370/abstract
local.edoc.container-publisher-nameWiley
local.edoc.container-volume34
local.edoc.container-issue10
local.edoc.container-year2013

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