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dc.contributor.authorNewson, AJ
dc.contributor.authorLeonard, SJ
dc.contributor.authorHall, A
dc.contributor.authorGaff, CL
dc.date.accessioned2020-12-21T01:14:51Z
dc.date.available2020-12-21T01:14:51Z
dc.date.issued2016-09-01
dc.identifierpii: 10.1186/s12920-016-0219-0
dc.identifier.citationNewson, A. J., Leonard, S. J., Hall, A. & Gaff, C. L. (2016). Known unknowns: building an ethics of uncertainty into genomic medicine. BMC MEDICAL GENOMICS, 9 (1), https://doi.org/10.1186/s12920-016-0219-0.
dc.identifier.issn1755-8794
dc.identifier.urihttp://hdl.handle.net/11343/256430
dc.description.abstractBACKGROUND: Genomic testing has reached the point where, technically at least, it can be cheaper to undertake panel-, exome- or whole genome testing than it is to sequence a single gene. An attribute of these approaches is that information gleaned will often have uncertain significance. In addition to the challenges this presents for pre-test counseling and informed consent, a further consideration emerges over how - ethically - we should conceive of and respond to this uncertainty. To date, the ethical aspects of uncertainty in genomics have remained under-explored. DISCUSSION: In this paper, we draft a conceptual and ethical response to the question of how to conceive of and respond to uncertainty in genomic medicine. After introducing the problem, we articulate a concept of 'genomic uncertainty'. Drawing on this, together with exemplar clinical cases and related empirical literature, we then critique the presumption that uncertainty is always problematic and something to be avoided, or eradicated. We conclude by outlining an 'ethics of genomic uncertainty'; describing how we might handle uncertainty in genomic medicine. This involves fostering resilience, welfare, autonomy and solidarity. CONCLUSIONS: Uncertainty will be an inherent aspect of clinical practice in genomics for some time to come. Genomic testing should not be offered with the explicit aim to reduce uncertainty. Rather, uncertainty should be appraised, adapted to and communicated about as part of the process of offering and providing genomic information.
dc.languageEnglish
dc.publisherBIOMED CENTRAL LTD
dc.rights.urihttps://creativecommons.org/licenses/by/4.0
dc.titleKnown unknowns: building an ethics of uncertainty into genomic medicine
dc.typeJournal Article
dc.identifier.doi10.1186/s12920-016-0219-0
melbourne.affiliation.departmentPaediatrics (RCH)
melbourne.source.titleBMC Medical Genomics
melbourne.source.volume9
melbourne.source.issue1
dc.rights.licenseCC BY
melbourne.elementsid1094720
melbourne.contributor.authorGaff, Clara
dc.identifier.eissn1755-8794
melbourne.accessrightsOpen Access


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