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Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias
Predictive testing protocols are intended to help patients affected with hereditary conditions understand their condition and make informed reproductive choices. However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decisi...
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| Published in: | Journal of genetic counseling 2011-06, Vol.20 (3), p.241-248 |
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| Main Authors: | , , , , , , , , , |
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| cites | cdi_FETCH-LOGICAL-c5251-390637ee3b4ce2ef39e9434735f327796f3d6144acb07b413355ea33f4bc7d1b3 |
| container_end_page | 248 |
| container_issue | 3 |
| container_start_page | 241 |
| container_title | Journal of genetic counseling |
| container_volume | 20 |
| creator | Mariño, Tania Cruz Armiñán, Rubén Reynaldo Cedeño, Humberto Jorge Mesa, José Miguel Laffita Zaldivar, Yanetza González Rodríguez, Raúl Aguilera Santos, Miguel Velázquez Mederos, Luis Enrique Almaguer Herrera, Milena Paneque Pérez, Luis Velázquez |
| description | Predictive testing protocols are intended to help patients affected with hereditary conditions understand their condition and make informed reproductive choices. However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities. |
| doi_str_mv | 10.1007/s10897-010-9347-4 |
| format | article |
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However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities.</description><identifier>ISSN: 1059-7700</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1007/s10897-010-9347-4</identifier><identifier>PMID: 21264501</identifier><identifier>CODEN: JGCOET</identifier><language>eng</language><publisher>Boston: Springer US</publisher><subject>Adolescent ; Adult ; At risk ; Ataxia ; Ataxins ; Biomedical and Life Sciences ; Biomedicine ; Case Presentation ; Clinical Psychology ; Cuba ; Diagnostic testing ; Ethical dilemmas ; Ethics ; Ethics, Medical ; Female ; Genetic Carrier Screening ; Genetic screening ; Genetic testing ; Genetic Testing - ethics ; Gynecology ; Hereditary ataxias ; Human Genetics ; Humans ; Nerve Tissue Proteins - genetics ; Pedigree ; Predictive testing program ; Predictive Value of Tests ; Prenatal Diagnosis ; Public Health ; Spinocerebellar ataxia type 2 ; Spinocerebellar Degenerations - diagnosis ; Spinocerebellar Degenerations - genetics ; Twins, Monozygotic</subject><ispartof>Journal of genetic counseling, 2011-06, Vol.20 (3), p.241-248</ispartof><rights>National Society of Genetic Counselors, Inc. 2011</rights><rights>2011 National Society of Genetic Counselors, Inc.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5251-390637ee3b4ce2ef39e9434735f327796f3d6144acb07b413355ea33f4bc7d1b3</citedby><cites>FETCH-LOGICAL-c5251-390637ee3b4ce2ef39e9434735f327796f3d6144acb07b413355ea33f4bc7d1b3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.proquest.com/docview/875539661?pq-origsite=primo$$EHTML$$P50$$Gproquest$$H</linktohtml><link.rule.ids>314,780,784,12845,21393,21394,27923,27924,30998,30999,33610,33611,34529,34530,43732,44114</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/21264501$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Mariño, Tania Cruz</creatorcontrib><creatorcontrib>Armiñán, Rubén Reynaldo</creatorcontrib><creatorcontrib>Cedeño, Humberto Jorge</creatorcontrib><creatorcontrib>Mesa, José Miguel Laffita</creatorcontrib><creatorcontrib>Zaldivar, Yanetza González</creatorcontrib><creatorcontrib>Rodríguez, Raúl Aguilera</creatorcontrib><creatorcontrib>Santos, Miguel Velázquez</creatorcontrib><creatorcontrib>Mederos, Luis Enrique Almaguer</creatorcontrib><creatorcontrib>Herrera, Milena Paneque</creatorcontrib><creatorcontrib>Pérez, Luis Velázquez</creatorcontrib><title>Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias</title><title>Journal of genetic counseling</title><addtitle>J Genet Counsel</addtitle><addtitle>J Genet Couns</addtitle><description>Predictive testing protocols are intended to help patients affected with hereditary conditions understand their condition and make informed reproductive choices. However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities.</description><subject>Adolescent</subject><subject>Adult</subject><subject>At risk</subject><subject>Ataxia</subject><subject>Ataxins</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Case Presentation</subject><subject>Clinical Psychology</subject><subject>Cuba</subject><subject>Diagnostic testing</subject><subject>Ethical dilemmas</subject><subject>Ethics</subject><subject>Ethics, Medical</subject><subject>Female</subject><subject>Genetic Carrier Screening</subject><subject>Genetic screening</subject><subject>Genetic testing</subject><subject>Genetic Testing - ethics</subject><subject>Gynecology</subject><subject>Hereditary ataxias</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Nerve Tissue Proteins - genetics</subject><subject>Pedigree</subject><subject>Predictive testing program</subject><subject>Predictive Value of Tests</subject><subject>Prenatal Diagnosis</subject><subject>Public Health</subject><subject>Spinocerebellar ataxia type 2</subject><subject>Spinocerebellar Degenerations - diagnosis</subject><subject>Spinocerebellar Degenerations - genetics</subject><subject>Twins, Monozygotic</subject><issn>1059-7700</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2011</creationdate><recordtype>article</recordtype><sourceid>7QJ</sourceid><sourceid>ALSLI</sourceid><sourceid>HEHIP</sourceid><sourceid>M2S</sourceid><recordid>eNqFkUtv1DAUhS0EakvpD2CDLDasUq7fMbtqGKatKsGirC0nczN1lcdgJ9D-exylgIRUzcpX8neO7rmHkLcMzhmA-ZgYlNYUwKCwQppCviAnTBlRCGXtyzyDsoUxAMfkdUr3AGBLxY7IMWdcSwXshKT1eBdq39LPocWu84mGnm6wxzHU9BbTGPrdJ7p-8N2-xUSbOHR0vEO6mirf029x2EXf0WaIecZtqMfwE7OX3_VDCokODb3E-WP08ZFejP4h-PSGvGp8m_Ds6T0l37-sb1eXxc3XzdXq4qaoFVesEBa0MIiikjVybIRFK3NMoRrBjbG6EVvNpPR1BaaSTAil0AvRyKo2W1aJU_Jh8d3H4ceUs7gupBrb1vc4TMmVVrOyBMMPk0ZzoZWBw6TWIFnJZ8_3_5H3wxT7HDjbKSWs1ixDbIHqOKQUsXH7GLp8K8fAzR27pWOXO3Zzx05mzbsn46nqcPtX8afUDJgF-JU7fTzs6K43Kwlczkq-KFMW9TuM_3Z-fp_fapHAPQ</recordid><startdate>201106</startdate><enddate>201106</enddate><creator>Mariño, Tania Cruz</creator><creator>Armiñán, Rubén Reynaldo</creator><creator>Cedeño, Humberto Jorge</creator><creator>Mesa, José Miguel Laffita</creator><creator>Zaldivar, Yanetza González</creator><creator>Rodríguez, Raúl Aguilera</creator><creator>Santos, Miguel Velázquez</creator><creator>Mederos, Luis Enrique Almaguer</creator><creator>Herrera, Milena Paneque</creator><creator>Pérez, Luis Velázquez</creator><general>Springer US</general><general>Blackwell Publishing Ltd</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8AO</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AN0</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2S</scope><scope>M7P</scope><scope>NAPCQ</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>RC3</scope><scope>7X8</scope><scope>7U1</scope><scope>7U2</scope><scope>C1K</scope></search><sort><creationdate>201106</creationdate><title>Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias</title><author>Mariño, Tania Cruz ; Armiñán, Rubén Reynaldo ; Cedeño, Humberto Jorge ; Mesa, José Miguel Laffita ; Zaldivar, Yanetza González ; Rodríguez, Raúl Aguilera ; Santos, Miguel Velázquez ; Mederos, Luis Enrique Almaguer ; Herrera, Milena Paneque ; Pérez, Luis Velázquez</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5251-390637ee3b4ce2ef39e9434735f327796f3d6144acb07b413355ea33f4bc7d1b3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2011</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>At risk</topic><topic>Ataxia</topic><topic>Ataxins</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedicine</topic><topic>Case Presentation</topic><topic>Clinical Psychology</topic><topic>Cuba</topic><topic>Diagnostic testing</topic><topic>Ethical dilemmas</topic><topic>Ethics</topic><topic>Ethics, Medical</topic><topic>Female</topic><topic>Genetic Carrier Screening</topic><topic>Genetic screening</topic><topic>Genetic testing</topic><topic>Genetic Testing - 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However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities.</abstract><cop>Boston</cop><pub>Springer US</pub><pmid>21264501</pmid><doi>10.1007/s10897-010-9347-4</doi><tpages>8</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of genetic counseling, 2011-06, Vol.20 (3), p.241-248 |
| issn | 1059-7700 1573-3599 |
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| source | Applied Social Sciences Index & Abstracts (ASSIA); Social Science Premium Collection; Wiley-Blackwell Read & Publish Collection; Sociology Collection |
| subjects | Adolescent Adult At risk Ataxia Ataxins Biomedical and Life Sciences Biomedicine Case Presentation Clinical Psychology Cuba Diagnostic testing Ethical dilemmas Ethics Ethics, Medical Female Genetic Carrier Screening Genetic screening Genetic testing Genetic Testing - ethics Gynecology Hereditary ataxias Human Genetics Humans Nerve Tissue Proteins - genetics Pedigree Predictive testing program Predictive Value of Tests Prenatal Diagnosis Public Health Spinocerebellar ataxia type 2 Spinocerebellar Degenerations - diagnosis Spinocerebellar Degenerations - genetics Twins, Monozygotic |
| title | Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias |
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