Known unknowns: building an ethics of uncertainty into genomic medicine.
Identifieur interne : 001B55 ( PubMed/Checkpoint ); précédent : 001B54; suivant : 001B56Known unknowns: building an ethics of uncertainty into genomic medicine.
Auteurs : Ainsley J. Newson [Australie] ; Samantha J. Leonard [France] ; Alison Hall [Royaume-Uni] ; Clara L. Gaff [Australie]Source :
- BMC medical genomics [ 1755-8794 ] ; 2016.
Descripteurs français
- KwdFr :
- MESH :
- génétique : Tumeurs.
- éthique : Dépistage génétique.
- Adulte d'âge moyen, Femelle, Génomique, Humains, Incertitude, Mâle, Éthique médicale.
English descriptors
- KwdEn :
- MESH :
- ethics : Genetic Testing.
- genetics : Neoplasms.
- Ethics, Medical, Female, Genomics, Humans, Male, Middle Aged, Uncertainty.
Abstract
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.
DOI: 10.1186/s12920-016-0219-0
PubMed: 27586379
Affiliations:
- Australie, France, Royaume-Uni
- Nouvelle-Galles du Sud, Victoria (État)
- Melbourne, Sydney
- Université de Sydney
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Newson</name><affiliation wicri:level="4"><nlm:affiliation>Centre for Values, Ethics and the Law in Medicine, Sydney School of Public Health, University of Sydney, Level 1, Medical Foundation Building K25, 92-94, Parramatta Road, Camperdown, NSW, 2006, Australia. ainsley.newson@sydney.edu.au.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Centre for Values, Ethics and the Law in Medicine, Sydney School of Public Health, University of Sydney, Level 1, Medical Foundation Building K25, 92-94, Parramatta Road, Camperdown, NSW, 2006</wicri:regionArea><orgName type="university">Université de Sydney</orgName><placeName><settlement type="city">Sydney</settlement><region type="état">Nouvelle-Galles du Sud</region></placeName></affiliation></author><author><name sortKey="Leonard, Samantha J" sort="Leonard, Samantha J" uniqKey="Leonard S" first="Samantha J" last="Leonard">Samantha J. Leonard</name><affiliation wicri:level="1"><nlm:affiliation>Inserm, Unite 1027, University Toulouse III, Paul Sabatier, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Inserm, Unite 1027, University Toulouse III, Paul Sabatier</wicri:regionArea><wicri:noRegion>Paul Sabatier</wicri:noRegion><wicri:noRegion>Paul Sabatier</wicri:noRegion></affiliation></author><author><name sortKey="Hall, Alison" sort="Hall, Alison" uniqKey="Hall A" first="Alison" last="Hall">Alison Hall</name><affiliation wicri:level="1"><nlm:affiliation>PHG Foundation, Cambridge, UK.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>PHG Foundation, Cambridge</wicri:regionArea><wicri:noRegion>Cambridge</wicri:noRegion></affiliation></author><author><name sortKey="Gaff, Clara L" sort="Gaff, Clara L" uniqKey="Gaff C" first="Clara L" last="Gaff">Clara L. Gaff</name><affiliation wicri:level="3"><nlm:affiliation>Melbourne Genomics Health Alliance, Melbourne, Australia.</nlm:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Melbourne Genomics Health Alliance, Melbourne</wicri:regionArea><placeName><settlement type="city">Melbourne</settlement><region type="état">Victoria (État)</region></placeName></affiliation></author></analytic><series><title level="j">BMC medical genomics</title><idno type="eISSN">1755-8794</idno><imprint><date when="2016" type="published">2016</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Ethics, Medical</term><term>Female</term><term>Genetic Testing (ethics)</term><term>Genomics</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Neoplasms (genetics)</term><term>Uncertainty</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Adulte d'âge moyen</term><term>Dépistage génétique (éthique)</term><term>Femelle</term><term>Génomique</term><term>Humains</term><term>Incertitude</term><term>Mâle</term><term>Tumeurs (génétique)</term><term>Éthique médicale</term></keywords><keywords scheme="MESH" qualifier="ethics" xml:lang="en"><term>Genetic Testing</term></keywords><keywords scheme="MESH" qualifier="genetics" xml:lang="en"><term>Neoplasms</term></keywords><keywords scheme="MESH" qualifier="génétique" xml:lang="fr"><term>Tumeurs</term></keywords><keywords scheme="MESH" qualifier="éthique" xml:lang="fr"><term>Dépistage génétique</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Ethics, Medical</term><term>Female</term><term>Genomics</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Uncertainty</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Adulte d'âge moyen</term><term>Femelle</term><term>Génomique</term><term>Humains</term><term>Incertitude</term><term>Mâle</term><term>Éthique médicale</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">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.</div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" Owner="NLM"><PMID Version="1">27586379</PMID><DateCreated><Year>2016</Year><Month>09</Month><Day>02</Day></DateCreated><DateCompleted><Year>2017</Year><Month>10</Month><Day>25</Day></DateCompleted><DateRevised><Year>2017</Year><Month>10</Month><Day>25</Day></DateRevised><Article PubModel="Electronic"><Journal><ISSN IssnType="Electronic">1755-8794</ISSN><JournalIssue CitedMedium="Internet"><Volume>9</Volume><Issue>1</Issue><PubDate><Year>2016</Year><Month>Sep</Month><Day>01</Day></PubDate></JournalIssue><Title>BMC medical genomics</Title><ISOAbbreviation>BMC Med Genomics</ISOAbbreviation></Journal><ArticleTitle>Known unknowns: building an ethics of uncertainty into genomic medicine.</ArticleTitle><Pagination><MedlinePgn>57</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1186/s12920-016-0219-0</ELocationID><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">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.</AbstractText><AbstractText Label="DISCUSSION" NlmCategory="CONCLUSIONS">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.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="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.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Newson</LastName><ForeName>Ainsley J</ForeName><Initials>AJ</Initials><AffiliationInfo><Affiliation>Centre for Values, Ethics and the Law in Medicine, Sydney School of Public Health, University of Sydney, Level 1, Medical Foundation Building K25, 92-94, Parramatta Road, Camperdown, NSW, 2006, Australia. ainsley.newson@sydney.edu.au.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Leonard</LastName><ForeName>Samantha J</ForeName><Initials>SJ</Initials><AffiliationInfo><Affiliation>Inserm, Unite 1027, University Toulouse III, Paul Sabatier, France.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Service de Genetique Medicale CHU Toulouse, Toulouse, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hall</LastName><ForeName>Alison</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>PHG Foundation, Cambridge, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Gaff</LastName><ForeName>Clara L</ForeName><Initials>CL</Initials><AffiliationInfo><Affiliation>Melbourne Genomics Health Alliance, Melbourne, Australia.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Departments of Paediatrics and Medicine, University of Melbourne, Melbourne, Australia.</Affiliation></AffiliationInfo></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2016</Year><Month>09</Month><Day>01</Day></ArticleDate></Article><MedlineJournalInfo><Country>England</Country><MedlineTA>BMC Med Genomics</MedlineTA><NlmUniqueID>101319628</NlmUniqueID><ISSNLinking>1755-8794</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><CommentsCorrectionsList><CommentsCorrections RefType="Cites"><RefSource>Perspect Biol Med. 2013 Winter;56(1):65-77</RefSource><PMID Version="1">23748527</PMID></CommentsCorrections><CommentsCorrections RefType="Cites"><RefSource>Genet Med. 2016 Nov;18(11):1090-1096</RefSource><PMID Version="1">26938784</PMID></CommentsCorrections><CommentsCorrections RefType="Cites"><RefSource>Psychooncology. 2013 May;22(5):1167-76</RefSource><PMID Version="1">22777929</PMID></CommentsCorrections><CommentsCorrections RefType="Cites"><RefSource>Genet Med. 2014 Dec;16(12):977-80</RefSource><PMID Version="1">24875302</PMID></CommentsCorrections><CommentsCorrections RefType="Cites"><RefSource>Prenat Diagn. 2012 Apr;32(4):389-95</RefSource><PMID Version="1">22467169</PMID></CommentsCorrections><CommentsCorrections RefType="Cites"><RefSource>Genet Med. 2016 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IdType="pmc">PMC5009566</ArticleId></ArticleIdList></PubmedData></pubmed><affiliations><list><country><li>Australie</li><li>France</li><li>Royaume-Uni</li></country><region><li>Nouvelle-Galles du Sud</li><li>Victoria (État)</li></region><settlement><li>Melbourne</li><li>Sydney</li></settlement><orgName><li>Université de Sydney</li></orgName></list><tree><country name="Australie"><region name="Nouvelle-Galles du Sud"><name sortKey="Newson, Ainsley J" sort="Newson, Ainsley J" uniqKey="Newson A" first="Ainsley J" last="Newson">Ainsley J. Newson</name></region><name sortKey="Gaff, Clara L" sort="Gaff, Clara L" uniqKey="Gaff C" first="Clara L" last="Gaff">Clara L. Gaff</name></country><country name="France"><noRegion><name sortKey="Leonard, Samantha J" sort="Leonard, Samantha J" uniqKey="Leonard S" first="Samantha J" last="Leonard">Samantha J. Leonard</name></noRegion></country><country name="Royaume-Uni"><noRegion><name sortKey="Hall, Alison" sort="Hall, Alison" uniqKey="Hall A" first="Alison" last="Hall">Alison Hall</name></noRegion></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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