Genetic counselling difficulties and ethical implications of incidental findings from array-CGH: a 7-year national survey
Microarray‐based comparative genomic hybridization (aCGH) is commonly used in diagnosing patients with intellectual disability (ID) with or without congenital malformation. Because aCGH interrogates with the whole genome, there is a risk of being confronted with incidental findings (IF). In order to...
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| Veröffentlicht in: | Clinical genetics 2016-05, Vol.89 (5), p.630-635 |
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| creator | Lefebvre, M. Sanlaville, D. Marle, N. Thauvin-Robinet, C. Gautier, E. Chehadeh, S.E. Mosca-Boidron, A.-L. Thevenon, J. Edery, P. Alex-Cordier, M.-P. Till, M. Lyonnet, S. Cormier-Daire, V. Amiel, J. Philippe, A. Romana, S. Malan, V. Afenjar, A. Marlin, S. Chantot-Bastaraud, S. Bitoun, P. Heron, B. Piparas, E. Morice-Picard, F. Moutton, S. Chassaing, N. Vigouroux-Castera, A. Lespinasse, J. Manouvrier-Hanu, S. Boute-Benejean, O. Vincent-Delorme, C. Petit, F. Meur, N.L. Marti-Dramard, M. Guerrot, A.-M. Goldenberg, A. Redon, S. Ferrec, C. Odent, S. Caignec, C.L. Mercier, S. Gilbert-Dussardier, B. Toutain, A. Arpin, S. Blesson, S. Mortemousque, I. Schaefer, E. Martin, D. Philip, N. Sigaudy, S. Busa, T. Missirian, C. Giuliano, F. Benailly, H.K. Kien, P.K.V. Leheup, B. Benneteau, C. Lambert, L. Caumes, R. Kuentz, P. François, I. Heron, D. Keren, B. Cretin, E. Callier, P. Julia, S. Faivre, L. |
| description | Microarray‐based comparative genomic hybridization (aCGH) is commonly used in diagnosing patients with intellectual disability (ID) with or without congenital malformation. Because aCGH interrogates with the whole genome, there is a risk of being confronted with incidental findings (IF). In order to anticipate the ethical issues of IF with the generalization of new genome‐wide analysis technologies, we questioned French clinicians and cytogeneticists about the situations they have faced regarding IF from aCGH. Sixty‐five IF were reported. Forty corresponded to autosomal dominant diseases with incomplete penetrance, 7 to autosomal dominant diseases with complete penetrance, 14 to X‐linked diseases, and 4 were heterozygotes for autosomal recessive diseases with a high prevalence of heterozygotes in the population. Therapeutic/preventive measures or genetic counselling could be argued for all cases except four. These four IF were intentionally not returned to the patients. Clinicians reported difficulties in returning the results in 29% of the cases, mainly when the question of IF had not been anticipated. Indeed, at the time of the investigation, only 48% of the clinicians used consents mentioning the risk of IF. With the emergence of new technologies, there is a need to report such national experiences; they show the importance of pre‐test information on IF.
Section Editor:
Aad Tibben, email: a.tibben@lumc.nl |
| doi_str_mv | 10.1111/cge.12696 |
| format | Article |
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Section Editor:
Aad Tibben, email: a.tibben@lumc.nl</description><identifier>ISSN: 0009-9163</identifier><identifier>EISSN: 1399-0004</identifier><identifier>DOI: 10.1111/cge.12696</identifier><identifier>PMID: 26582393</identifier><language>eng</language><publisher>Oxford, UK: Blackwell Publishing Ltd</publisher><subject>aCGH ; Comparative Genomic Hybridization - methods ; Disclosure - ethics ; Disease prevention ; ethical issues ; Female ; France ; Genes, Dominant - genetics ; Genes, Recessive - genetics ; Genetic counseling ; Genetic Counseling - ethics ; Genetic Counseling - methods ; Genetic Diseases, Inborn - diagnosis ; Genetic Diseases, Inborn - genetics ; Genetic Diseases, X-Linked - diagnosis ; Genetic Diseases, X-Linked - genetics ; Genetic disorders ; Genetic testing ; Genetics ; Genomes ; Humans ; Incidental Findings ; Life Sciences ; Male ; Microarray Analysis - methods ; Physician-Patient Relations - ethics ; pre-test information ; Retrospective Studies ; Surveys and Questionnaires</subject><ispartof>Clinical genetics, 2016-05, Vol.89 (5), p.630-635</ispartof><rights>2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd</rights><rights>2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.</rights><rights>2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd</rights><rights>Distributed under a Creative Commons Attribution 4.0 International License</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4936-81f73f405553d27e61d502fcd101ea7beef311489598ab01d00c708d53ce1df53</citedby><cites>FETCH-LOGICAL-c4936-81f73f405553d27e61d502fcd101ea7beef311489598ab01d00c708d53ce1df53</cites><orcidid>0000-0001-9271-3961 ; 0000-0001-7310-1142 ; 0000-0003-4454-1979 ; 0000-0003-1613-6570 ; 0000-0003-2814-6303 ; 0000-0001-6172-8247 ; 0000-0002-9794-1848 ; 0000-0002-5999-5300 ; 0000-0001-6446-3504 ; 0000-0001-7754-969X ; 0000-0001-8976-5832 ; 0000-0001-7182-9914 ; 0000-0003-0234-8820 ; 0000-0001-9939-2849 ; 0000-0002-6627-8748 ; 0000-0001-9770-444X</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fcge.12696$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fcge.12696$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,776,780,881,1411,27901,27902,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/26582393$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink><backlink>$$Uhttps://univ-rennes.hal.science/hal-01237103$$DView record in HAL$$Hfree_for_read</backlink></links><search><creatorcontrib>Lefebvre, M.</creatorcontrib><creatorcontrib>Sanlaville, D.</creatorcontrib><creatorcontrib>Marle, N.</creatorcontrib><creatorcontrib>Thauvin-Robinet, C.</creatorcontrib><creatorcontrib>Gautier, E.</creatorcontrib><creatorcontrib>Chehadeh, S.E.</creatorcontrib><creatorcontrib>Mosca-Boidron, A.-L.</creatorcontrib><creatorcontrib>Thevenon, J.</creatorcontrib><creatorcontrib>Edery, P.</creatorcontrib><creatorcontrib>Alex-Cordier, M.-P.</creatorcontrib><creatorcontrib>Till, M.</creatorcontrib><creatorcontrib>Lyonnet, S.</creatorcontrib><creatorcontrib>Cormier-Daire, V.</creatorcontrib><creatorcontrib>Amiel, J.</creatorcontrib><creatorcontrib>Philippe, A.</creatorcontrib><creatorcontrib>Romana, S.</creatorcontrib><creatorcontrib>Malan, V.</creatorcontrib><creatorcontrib>Afenjar, A.</creatorcontrib><creatorcontrib>Marlin, S.</creatorcontrib><creatorcontrib>Chantot-Bastaraud, S.</creatorcontrib><creatorcontrib>Bitoun, P.</creatorcontrib><creatorcontrib>Heron, B.</creatorcontrib><creatorcontrib>Piparas, E.</creatorcontrib><creatorcontrib>Morice-Picard, F.</creatorcontrib><creatorcontrib>Moutton, S.</creatorcontrib><creatorcontrib>Chassaing, N.</creatorcontrib><creatorcontrib>Vigouroux-Castera, A.</creatorcontrib><creatorcontrib>Lespinasse, J.</creatorcontrib><creatorcontrib>Manouvrier-Hanu, S.</creatorcontrib><creatorcontrib>Boute-Benejean, O.</creatorcontrib><creatorcontrib>Vincent-Delorme, C.</creatorcontrib><creatorcontrib>Petit, F.</creatorcontrib><creatorcontrib>Meur, N.L.</creatorcontrib><creatorcontrib>Marti-Dramard, M.</creatorcontrib><creatorcontrib>Guerrot, A.-M.</creatorcontrib><creatorcontrib>Goldenberg, A.</creatorcontrib><creatorcontrib>Redon, S.</creatorcontrib><creatorcontrib>Ferrec, C.</creatorcontrib><creatorcontrib>Odent, S.</creatorcontrib><creatorcontrib>Caignec, C.L.</creatorcontrib><creatorcontrib>Mercier, S.</creatorcontrib><creatorcontrib>Gilbert-Dussardier, B.</creatorcontrib><creatorcontrib>Toutain, A.</creatorcontrib><creatorcontrib>Arpin, S.</creatorcontrib><creatorcontrib>Blesson, S.</creatorcontrib><creatorcontrib>Mortemousque, I.</creatorcontrib><creatorcontrib>Schaefer, E.</creatorcontrib><creatorcontrib>Martin, D.</creatorcontrib><creatorcontrib>Philip, N.</creatorcontrib><creatorcontrib>Sigaudy, S.</creatorcontrib><creatorcontrib>Busa, T.</creatorcontrib><creatorcontrib>Missirian, C.</creatorcontrib><creatorcontrib>Giuliano, F.</creatorcontrib><creatorcontrib>Benailly, H.K.</creatorcontrib><creatorcontrib>Kien, P.K.V.</creatorcontrib><creatorcontrib>Leheup, B.</creatorcontrib><creatorcontrib>Benneteau, C.</creatorcontrib><creatorcontrib>Lambert, L.</creatorcontrib><creatorcontrib>Caumes, R.</creatorcontrib><creatorcontrib>Kuentz, P.</creatorcontrib><creatorcontrib>François, I.</creatorcontrib><creatorcontrib>Heron, D.</creatorcontrib><creatorcontrib>Keren, B.</creatorcontrib><creatorcontrib>Cretin, E.</creatorcontrib><creatorcontrib>Callier, P.</creatorcontrib><creatorcontrib>Julia, S.</creatorcontrib><creatorcontrib>Faivre, L.</creatorcontrib><title>Genetic counselling difficulties and ethical implications of incidental findings from array-CGH: a 7-year national survey</title><title>Clinical genetics</title><addtitle>Clin Genet</addtitle><description>Microarray‐based comparative genomic hybridization (aCGH) is commonly used in diagnosing patients with intellectual disability (ID) with or without congenital malformation. Because aCGH interrogates with the whole genome, there is a risk of being confronted with incidental findings (IF). In order to anticipate the ethical issues of IF with the generalization of new genome‐wide analysis technologies, we questioned French clinicians and cytogeneticists about the situations they have faced regarding IF from aCGH. Sixty‐five IF were reported. Forty corresponded to autosomal dominant diseases with incomplete penetrance, 7 to autosomal dominant diseases with complete penetrance, 14 to X‐linked diseases, and 4 were heterozygotes for autosomal recessive diseases with a high prevalence of heterozygotes in the population. Therapeutic/preventive measures or genetic counselling could be argued for all cases except four. These four IF were intentionally not returned to the patients. Clinicians reported difficulties in returning the results in 29% of the cases, mainly when the question of IF had not been anticipated. Indeed, at the time of the investigation, only 48% of the clinicians used consents mentioning the risk of IF. With the emergence of new technologies, there is a need to report such national experiences; they show the importance of pre‐test information on IF.
Section Editor:
Aad Tibben, email: a.tibben@lumc.nl</description><subject>aCGH</subject><subject>Comparative Genomic Hybridization - methods</subject><subject>Disclosure - ethics</subject><subject>Disease prevention</subject><subject>ethical issues</subject><subject>Female</subject><subject>France</subject><subject>Genes, Dominant - genetics</subject><subject>Genes, Recessive - genetics</subject><subject>Genetic counseling</subject><subject>Genetic Counseling - ethics</subject><subject>Genetic Counseling - methods</subject><subject>Genetic Diseases, Inborn - diagnosis</subject><subject>Genetic Diseases, Inborn - genetics</subject><subject>Genetic Diseases, X-Linked - diagnosis</subject><subject>Genetic Diseases, X-Linked - genetics</subject><subject>Genetic disorders</subject><subject>Genetic testing</subject><subject>Genetics</subject><subject>Genomes</subject><subject>Humans</subject><subject>Incidental Findings</subject><subject>Life Sciences</subject><subject>Male</subject><subject>Microarray Analysis - methods</subject><subject>Physician-Patient Relations - ethics</subject><subject>pre-test information</subject><subject>Retrospective Studies</subject><subject>Surveys and 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counselling difficulties and ethical implications of incidental findings from array-CGH: a 7-year national survey</title><author>Lefebvre, M. ; Sanlaville, D. ; Marle, N. ; Thauvin-Robinet, C. ; Gautier, E. ; Chehadeh, S.E. ; Mosca-Boidron, A.-L. ; Thevenon, J. ; Edery, P. ; Alex-Cordier, M.-P. ; Till, M. ; Lyonnet, S. ; Cormier-Daire, V. ; Amiel, J. ; Philippe, A. ; Romana, S. ; Malan, V. ; Afenjar, A. ; Marlin, S. ; Chantot-Bastaraud, S. ; Bitoun, P. ; Heron, B. ; Piparas, E. ; Morice-Picard, F. ; Moutton, S. ; Chassaing, N. ; Vigouroux-Castera, A. ; Lespinasse, J. ; Manouvrier-Hanu, S. ; Boute-Benejean, O. ; Vincent-Delorme, C. ; Petit, F. ; Meur, N.L. ; Marti-Dramard, M. ; Guerrot, A.-M. ; Goldenberg, A. ; Redon, S. ; Ferrec, C. ; Odent, S. ; Caignec, C.L. ; Mercier, S. ; Gilbert-Dussardier, B. ; Toutain, A. ; Arpin, S. ; Blesson, S. ; Mortemousque, I. ; Schaefer, E. ; Martin, D. ; Philip, N. ; Sigaudy, S. ; Busa, T. ; Missirian, C. ; Giuliano, F. ; Benailly, H.K. ; Kien, P.K.V. ; Leheup, B. ; Benneteau, C. ; Lambert, L. ; Caumes, R. ; Kuentz, P. ; François, I. ; Heron, D. ; Keren, B. ; Cretin, E. ; Callier, P. ; Julia, S. ; Faivre, L.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4936-81f73f405553d27e61d502fcd101ea7beef311489598ab01d00c708d53ce1df53</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2016</creationdate><topic>aCGH</topic><topic>Comparative Genomic Hybridization - methods</topic><topic>Disclosure - ethics</topic><topic>Disease prevention</topic><topic>ethical issues</topic><topic>Female</topic><topic>France</topic><topic>Genes, Dominant - genetics</topic><topic>Genes, Recessive - genetics</topic><topic>Genetic counseling</topic><topic>Genetic Counseling - ethics</topic><topic>Genetic Counseling - methods</topic><topic>Genetic Diseases, Inborn - diagnosis</topic><topic>Genetic Diseases, Inborn - genetics</topic><topic>Genetic Diseases, X-Linked - diagnosis</topic><topic>Genetic Diseases, X-Linked - genetics</topic><topic>Genetic disorders</topic><topic>Genetic testing</topic><topic>Genetics</topic><topic>Genomes</topic><topic>Humans</topic><topic>Incidental Findings</topic><topic>Life Sciences</topic><topic>Male</topic><topic>Microarray Analysis - methods</topic><topic>Physician-Patient Relations - ethics</topic><topic>pre-test information</topic><topic>Retrospective Studies</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Lefebvre, M.</creatorcontrib><creatorcontrib>Sanlaville, D.</creatorcontrib><creatorcontrib>Marle, N.</creatorcontrib><creatorcontrib>Thauvin-Robinet, C.</creatorcontrib><creatorcontrib>Gautier, E.</creatorcontrib><creatorcontrib>Chehadeh, S.E.</creatorcontrib><creatorcontrib>Mosca-Boidron, A.-L.</creatorcontrib><creatorcontrib>Thevenon, J.</creatorcontrib><creatorcontrib>Edery, P.</creatorcontrib><creatorcontrib>Alex-Cordier, M.-P.</creatorcontrib><creatorcontrib>Till, M.</creatorcontrib><creatorcontrib>Lyonnet, S.</creatorcontrib><creatorcontrib>Cormier-Daire, V.</creatorcontrib><creatorcontrib>Amiel, J.</creatorcontrib><creatorcontrib>Philippe, A.</creatorcontrib><creatorcontrib>Romana, S.</creatorcontrib><creatorcontrib>Malan, V.</creatorcontrib><creatorcontrib>Afenjar, A.</creatorcontrib><creatorcontrib>Marlin, S.</creatorcontrib><creatorcontrib>Chantot-Bastaraud, S.</creatorcontrib><creatorcontrib>Bitoun, P.</creatorcontrib><creatorcontrib>Heron, B.</creatorcontrib><creatorcontrib>Piparas, E.</creatorcontrib><creatorcontrib>Morice-Picard, F.</creatorcontrib><creatorcontrib>Moutton, S.</creatorcontrib><creatorcontrib>Chassaing, N.</creatorcontrib><creatorcontrib>Vigouroux-Castera, A.</creatorcontrib><creatorcontrib>Lespinasse, J.</creatorcontrib><creatorcontrib>Manouvrier-Hanu, S.</creatorcontrib><creatorcontrib>Boute-Benejean, O.</creatorcontrib><creatorcontrib>Vincent-Delorme, C.</creatorcontrib><creatorcontrib>Petit, F.</creatorcontrib><creatorcontrib>Meur, N.L.</creatorcontrib><creatorcontrib>Marti-Dramard, M.</creatorcontrib><creatorcontrib>Guerrot, A.-M.</creatorcontrib><creatorcontrib>Goldenberg, A.</creatorcontrib><creatorcontrib>Redon, S.</creatorcontrib><creatorcontrib>Ferrec, C.</creatorcontrib><creatorcontrib>Odent, S.</creatorcontrib><creatorcontrib>Caignec, C.L.</creatorcontrib><creatorcontrib>Mercier, S.</creatorcontrib><creatorcontrib>Gilbert-Dussardier, B.</creatorcontrib><creatorcontrib>Toutain, A.</creatorcontrib><creatorcontrib>Arpin, S.</creatorcontrib><creatorcontrib>Blesson, S.</creatorcontrib><creatorcontrib>Mortemousque, I.</creatorcontrib><creatorcontrib>Schaefer, E.</creatorcontrib><creatorcontrib>Martin, D.</creatorcontrib><creatorcontrib>Philip, N.</creatorcontrib><creatorcontrib>Sigaudy, S.</creatorcontrib><creatorcontrib>Busa, T.</creatorcontrib><creatorcontrib>Missirian, C.</creatorcontrib><creatorcontrib>Giuliano, F.</creatorcontrib><creatorcontrib>Benailly, H.K.</creatorcontrib><creatorcontrib>Kien, P.K.V.</creatorcontrib><creatorcontrib>Leheup, B.</creatorcontrib><creatorcontrib>Benneteau, C.</creatorcontrib><creatorcontrib>Lambert, L.</creatorcontrib><creatorcontrib>Caumes, R.</creatorcontrib><creatorcontrib>Kuentz, P.</creatorcontrib><creatorcontrib>François, I.</creatorcontrib><creatorcontrib>Heron, D.</creatorcontrib><creatorcontrib>Keren, B.</creatorcontrib><creatorcontrib>Cretin, E.</creatorcontrib><creatorcontrib>Callier, P.</creatorcontrib><creatorcontrib>Julia, S.</creatorcontrib><creatorcontrib>Faivre, L.</creatorcontrib><collection>Istex</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Neurosciences Abstracts</collection><collection>Technology Research Database</collection><collection>Engineering Research Database</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><collection>Hyper Article en Ligne (HAL)</collection><collection>Hyper Article en Ligne (HAL) (Open Access)</collection><jtitle>Clinical genetics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Lefebvre, M.</au><au>Sanlaville, D.</au><au>Marle, N.</au><au>Thauvin-Robinet, C.</au><au>Gautier, E.</au><au>Chehadeh, S.E.</au><au>Mosca-Boidron, A.-L.</au><au>Thevenon, J.</au><au>Edery, P.</au><au>Alex-Cordier, M.-P.</au><au>Till, M.</au><au>Lyonnet, S.</au><au>Cormier-Daire, V.</au><au>Amiel, J.</au><au>Philippe, A.</au><au>Romana, S.</au><au>Malan, V.</au><au>Afenjar, A.</au><au>Marlin, S.</au><au>Chantot-Bastaraud, S.</au><au>Bitoun, P.</au><au>Heron, B.</au><au>Piparas, E.</au><au>Morice-Picard, F.</au><au>Moutton, S.</au><au>Chassaing, N.</au><au>Vigouroux-Castera, A.</au><au>Lespinasse, J.</au><au>Manouvrier-Hanu, S.</au><au>Boute-Benejean, O.</au><au>Vincent-Delorme, C.</au><au>Petit, F.</au><au>Meur, N.L.</au><au>Marti-Dramard, M.</au><au>Guerrot, A.-M.</au><au>Goldenberg, A.</au><au>Redon, S.</au><au>Ferrec, C.</au><au>Odent, S.</au><au>Caignec, C.L.</au><au>Mercier, S.</au><au>Gilbert-Dussardier, B.</au><au>Toutain, A.</au><au>Arpin, S.</au><au>Blesson, S.</au><au>Mortemousque, I.</au><au>Schaefer, E.</au><au>Martin, D.</au><au>Philip, N.</au><au>Sigaudy, S.</au><au>Busa, T.</au><au>Missirian, C.</au><au>Giuliano, F.</au><au>Benailly, H.K.</au><au>Kien, P.K.V.</au><au>Leheup, B.</au><au>Benneteau, C.</au><au>Lambert, L.</au><au>Caumes, R.</au><au>Kuentz, P.</au><au>François, I.</au><au>Heron, D.</au><au>Keren, B.</au><au>Cretin, E.</au><au>Callier, P.</au><au>Julia, S.</au><au>Faivre, L.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Genetic counselling difficulties and ethical implications of incidental findings from array-CGH: a 7-year national survey</atitle><jtitle>Clinical genetics</jtitle><addtitle>Clin Genet</addtitle><date>2016-05</date><risdate>2016</risdate><volume>89</volume><issue>5</issue><spage>630</spage><epage>635</epage><pages>630-635</pages><issn>0009-9163</issn><eissn>1399-0004</eissn><abstract>Microarray‐based comparative genomic hybridization (aCGH) is commonly used in diagnosing patients with intellectual disability (ID) with or without congenital malformation. Because aCGH interrogates with the whole genome, there is a risk of being confronted with incidental findings (IF). In order to anticipate the ethical issues of IF with the generalization of new genome‐wide analysis technologies, we questioned French clinicians and cytogeneticists about the situations they have faced regarding IF from aCGH. Sixty‐five IF were reported. Forty corresponded to autosomal dominant diseases with incomplete penetrance, 7 to autosomal dominant diseases with complete penetrance, 14 to X‐linked diseases, and 4 were heterozygotes for autosomal recessive diseases with a high prevalence of heterozygotes in the population. Therapeutic/preventive measures or genetic counselling could be argued for all cases except four. These four IF were intentionally not returned to the patients. Clinicians reported difficulties in returning the results in 29% of the cases, mainly when the question of IF had not been anticipated. Indeed, at the time of the investigation, only 48% of the clinicians used consents mentioning the risk of IF. With the emergence of new technologies, there is a need to report such national experiences; they show the importance of pre‐test information on IF.
Section Editor:
Aad Tibben, email: a.tibben@lumc.nl</abstract><cop>Oxford, UK</cop><pub>Blackwell Publishing Ltd</pub><pmid>26582393</pmid><doi>10.1111/cge.12696</doi><tpages>6</tpages><orcidid>https://orcid.org/0000-0001-9271-3961</orcidid><orcidid>https://orcid.org/0000-0001-7310-1142</orcidid><orcidid>https://orcid.org/0000-0003-4454-1979</orcidid><orcidid>https://orcid.org/0000-0003-1613-6570</orcidid><orcidid>https://orcid.org/0000-0003-2814-6303</orcidid><orcidid>https://orcid.org/0000-0001-6172-8247</orcidid><orcidid>https://orcid.org/0000-0002-9794-1848</orcidid><orcidid>https://orcid.org/0000-0002-5999-5300</orcidid><orcidid>https://orcid.org/0000-0001-6446-3504</orcidid><orcidid>https://orcid.org/0000-0001-7754-969X</orcidid><orcidid>https://orcid.org/0000-0001-8976-5832</orcidid><orcidid>https://orcid.org/0000-0001-7182-9914</orcidid><orcidid>https://orcid.org/0000-0003-0234-8820</orcidid><orcidid>https://orcid.org/0000-0001-9939-2849</orcidid><orcidid>https://orcid.org/0000-0002-6627-8748</orcidid><orcidid>https://orcid.org/0000-0001-9770-444X</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0009-9163 |
| ispartof | Clinical genetics, 2016-05, Vol.89 (5), p.630-635 |
| issn | 0009-9163 1399-0004 |
| language | eng |
| recordid | cdi_hal_primary_oai_HAL_hal_01237103v1 |
| source | MEDLINE; Wiley Online Library Journals Frontfile Complete |
| subjects | aCGH Comparative Genomic Hybridization - methods Disclosure - ethics Disease prevention ethical issues Female France Genes, Dominant - genetics Genes, Recessive - genetics Genetic counseling Genetic Counseling - ethics Genetic Counseling - methods Genetic Diseases, Inborn - diagnosis Genetic Diseases, Inborn - genetics Genetic Diseases, X-Linked - diagnosis Genetic Diseases, X-Linked - genetics Genetic disorders Genetic testing Genetics Genomes Humans Incidental Findings Life Sciences Male Microarray Analysis - methods Physician-Patient Relations - ethics pre-test information Retrospective Studies Surveys and Questionnaires |
| title | Genetic counselling difficulties and ethical implications of incidental findings from array-CGH: a 7-year national survey |
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