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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Genetic testing and counseling for hereditary neurological diseases in Mali</title><author><name sortKey="Meilleur, Katherine Gloria" sort="Meilleur, Katherine Gloria" uniqKey="Meilleur K" first="Katherine Gloria" last="Meilleur">Katherine Gloria Meilleur</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation><affiliation><nlm:aff id="Aff2">National Institute of Nursing Research, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation><affiliation><nlm:aff id="Aff3">School of Nursing, Johns Hopkins University, Baltimore, MD USA</nlm:aff></affiliation></author><author><name sortKey="Coulibaly, Souleymane" sort="Coulibaly, Souleymane" uniqKey="Coulibaly S" first="Souleymane" last="Coulibaly">Souleymane Coulibaly</name><affiliation><nlm:aff id="Aff4">Department of Psychology, Point G Hospital, Bamako, Mali</nlm:aff></affiliation></author><author><name sortKey="Traore, Moussa" sort="Traore, Moussa" uniqKey="Traore M" first="Moussa" last="Traoré">Moussa Traoré</name><affiliation><nlm:aff id="Aff5">Department of Neurology, Point G Hospital, Bamako, Mali</nlm:aff></affiliation></author><author><name sortKey="Landoure, Guida" sort="Landoure, Guida" uniqKey="Landoure G" first="Guida" last="Landouré">Guida Landouré</name><affiliation><nlm:aff id="Aff6">University College London, London, UK</nlm:aff></affiliation></author><author><name sortKey="La Pean, Alison" sort="La Pean, Alison" uniqKey="La Pean A" first="Alison" last="La Pean">Alison La Pean</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation></author><author><name sortKey="Sangare, Modibo" sort="Sangare, Modibo" uniqKey="Sangare M" first="Modibo" last="Sangaré">Modibo Sangaré</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation></author><author><name sortKey="Mochel, Fanny" sort="Mochel, Fanny" uniqKey="Mochel F" first="Fanny" last="Mochel">Fanny Mochel</name><affiliation><nlm:aff id="Aff7">INSERM U679, Hôpital La Salpêtrière, Paris, France</nlm:aff></affiliation></author><author><name sortKey="Traore, Siona" sort="Traore, Siona" uniqKey="Traore S" first="Siona" last="Traoré">Siona Traoré</name><affiliation><nlm:aff id="Aff5">Department of Neurology, Point G Hospital, Bamako, Mali</nlm:aff></affiliation></author><author><name sortKey="Fischbeck, Kenneth H" sort="Fischbeck, Kenneth H" uniqKey="Fischbeck K" first="Kenneth H." last="Fischbeck">Kenneth H. Fischbeck</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation></author><author><name sortKey="Han, Hae Ra" sort="Han, Hae Ra" uniqKey="Han H" first="Hae-Ra" last="Han">Hae-Ra Han</name><affiliation><nlm:aff id="Aff3">School of Nursing, Johns Hopkins University, Baltimore, MD USA</nlm:aff></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">22109722</idno><idno type="pmc">3186021</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3186021</idno><idno type="RBID">PMC:3186021</idno><idno type="doi">10.1007/s12687-011-0038-0</idno><date when="2011">2011</date><idno type="wicri:Area/Pmc/Corpus">000498</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">000498</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Genetic testing and counseling for hereditary neurological diseases in Mali</title><author><name sortKey="Meilleur, Katherine Gloria" sort="Meilleur, Katherine Gloria" uniqKey="Meilleur K" first="Katherine Gloria" last="Meilleur">Katherine Gloria Meilleur</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation><affiliation><nlm:aff id="Aff2">National Institute of Nursing Research, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation><affiliation><nlm:aff id="Aff3">School of Nursing, Johns Hopkins University, Baltimore, MD USA</nlm:aff></affiliation></author><author><name sortKey="Coulibaly, Souleymane" sort="Coulibaly, Souleymane" uniqKey="Coulibaly S" first="Souleymane" last="Coulibaly">Souleymane Coulibaly</name><affiliation><nlm:aff id="Aff4">Department of Psychology, Point G Hospital, Bamako, Mali</nlm:aff></affiliation></author><author><name sortKey="Traore, Moussa" sort="Traore, Moussa" uniqKey="Traore M" first="Moussa" last="Traoré">Moussa Traoré</name><affiliation><nlm:aff id="Aff5">Department of Neurology, Point G Hospital, Bamako, Mali</nlm:aff></affiliation></author><author><name sortKey="Landoure, Guida" sort="Landoure, Guida" uniqKey="Landoure G" first="Guida" last="Landouré">Guida Landouré</name><affiliation><nlm:aff id="Aff6">University College London, London, UK</nlm:aff></affiliation></author><author><name sortKey="La Pean, Alison" sort="La Pean, Alison" uniqKey="La Pean A" first="Alison" last="La Pean">Alison La Pean</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation></author><author><name sortKey="Sangare, Modibo" sort="Sangare, Modibo" uniqKey="Sangare M" first="Modibo" last="Sangaré">Modibo Sangaré</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation></author><author><name sortKey="Mochel, Fanny" sort="Mochel, Fanny" uniqKey="Mochel F" first="Fanny" last="Mochel">Fanny Mochel</name><affiliation><nlm:aff id="Aff7">INSERM U679, Hôpital La Salpêtrière, Paris, France</nlm:aff></affiliation></author><author><name sortKey="Traore, Siona" sort="Traore, Siona" uniqKey="Traore S" first="Siona" last="Traoré">Siona Traoré</name><affiliation><nlm:aff id="Aff5">Department of Neurology, Point G Hospital, Bamako, Mali</nlm:aff></affiliation></author><author><name sortKey="Fischbeck, Kenneth H" sort="Fischbeck, Kenneth H" uniqKey="Fischbeck K" first="Kenneth H." last="Fischbeck">Kenneth H. Fischbeck</name><affiliation><nlm:aff id="Aff1">National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</nlm:aff></affiliation></author><author><name sortKey="Han, Hae Ra" sort="Han, Hae Ra" uniqKey="Han H" first="Hae-Ra" last="Han">Hae-Ra Han</name><affiliation><nlm:aff id="Aff3">School of Nursing, Johns Hopkins University, Baltimore, MD USA</nlm:aff></affiliation></author></analytic><series><title level="j">Journal of community genetics</title><idno type="ISSN">1868-310X</idno><idno type="eISSN">1868-6001</idno><imprint><date when="2011">2011</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>As genetic advances become incorporated into health care delivery, disparities between developing and developed countries may become greater. By addressing genetic health care needs and specific differences of developing countries, these disparities may be mitigated. We sought to describe the attitudes and knowledge of subjects with hereditary neurological diseases in Mali before and after receiving genetic testing and counseling for the first time. A questionnaire of attitudes and knowledge items was adapted and piloted for use in Mali. We found that the majority of subjects had positive attitudes toward genetic testing and counseling, both before and afterwards. Subjects responded to approximately half of the knowledge questions regarding hereditary transmission correctly before and after genetic testing and counseling. Neither overall attitudes nor knowledge scores changed significantly from baseline. Concerns about confidentiality were expressed by the majority of subjects. These findings indicate that, despite limited knowledge of patterns of inheritance, Malians understood the sensitive nature of this information and were favorable toward receiving genetic testing and counseling for diagnostic and prognostic purposes.</p></div></front></TEI><pmc article-type="research-article"><pmc-comment>The publisher of this article does not allow downloading of the full text in XML form.</pmc-comment>
<front><journal-meta><journal-id journal-id-type="nlm-ta">J Community Genet</journal-id><journal-title-group><journal-title>Journal of community genetics</journal-title></journal-title-group><issn pub-type="ppub">1868-310X</issn><issn pub-type="epub">1868-6001</issn><publisher><publisher-name>Springer-Verlag</publisher-name><publisher-loc>Berlin/Heidelberg</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">22109722</article-id><article-id pub-id-type="pmc">3186021</article-id><article-id pub-id-type="publisher-id">38</article-id><article-id pub-id-type="doi">10.1007/s12687-011-0038-0</article-id><article-categories><subj-group subj-group-type="heading"><subject>Original Article</subject></subj-group></article-categories><title-group><article-title>Genetic testing and counseling for hereditary neurological diseases in Mali</article-title></title-group><contrib-group><contrib contrib-type="author" corresp="yes"><name><surname>Meilleur</surname><given-names>Katherine Gloria</given-names></name><address><phone>+1-301-5949781</phone><fax>+1-301-4800056</fax><email>meilleurk@mail.nih.gov</email></address><xref ref-type="aff" rid="Aff1">1</xref><xref ref-type="aff" rid="Aff2">2</xref><xref ref-type="aff" rid="Aff3">3</xref></contrib><contrib contrib-type="author"><name><surname>Coulibaly</surname><given-names>Souleymane</given-names></name><xref ref-type="aff" rid="Aff4">4</xref></contrib><contrib contrib-type="author"><name><surname>Traoré</surname><given-names>Moussa</given-names></name><xref ref-type="aff" rid="Aff5">5</xref></contrib><contrib contrib-type="author"><name><surname>Landouré</surname><given-names>Guida</given-names></name><xref ref-type="aff" rid="Aff6">6</xref></contrib><contrib contrib-type="author"><name><surname>La Pean</surname><given-names>Alison</given-names></name><xref ref-type="aff" rid="Aff1">1</xref></contrib><contrib contrib-type="author"><name><surname>Sangaré</surname><given-names>Modibo</given-names></name><xref ref-type="aff" rid="Aff1">1</xref></contrib><contrib contrib-type="author"><name><surname>Mochel</surname><given-names>Fanny</given-names></name><xref ref-type="aff" rid="Aff7">7</xref></contrib><contrib contrib-type="author"><name><surname>Traoré</surname><given-names>Siona</given-names></name><xref ref-type="aff" rid="Aff5">5</xref></contrib><contrib contrib-type="author"><name><surname>Fischbeck</surname><given-names>Kenneth H.</given-names></name><xref ref-type="aff" rid="Aff1">1</xref></contrib><contrib contrib-type="author"><name><surname>Han</surname><given-names>Hae-Ra</given-names></name><xref ref-type="aff" rid="Aff3">3</xref></contrib><aff id="Aff1"><label>1</label>National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD USA</aff><aff id="Aff2"><label>2</label>National Institute of Nursing Research, National Institutes of Health, Bethesda, MD USA</aff><aff id="Aff3"><label>3</label>School of Nursing, Johns Hopkins University, Baltimore, MD USA</aff><aff id="Aff4"><label>4</label>Department of Psychology, Point G Hospital, Bamako, Mali</aff><aff id="Aff5"><label>5</label>Department of Neurology, Point G Hospital, Bamako, Mali</aff><aff id="Aff6"><label>6</label>University College London, London, UK</aff><aff id="Aff7"><label>7</label>INSERM U679, Hôpital La Salpêtrière, Paris, France</aff></contrib-group><pub-date pub-type="epub"><day>22</day><month>2</month><year>2011</year></pub-date><pub-date pub-type="ppub"><month>3</month><year>2011</year></pub-date><volume>2</volume><issue>1</issue><fpage>33</fpage><lpage>42</lpage><history><date date-type="received"><day>23</day><month>3</month><year>2010</year></date><date date-type="accepted"><day>21</day><month>1</month><year>2011</year></date></history><permissions><copyright-statement>© Springer-Verlag (outside the USA) 2011</copyright-statement></permissions><abstract id="Abs1"><p>As genetic advances become incorporated into health care delivery, disparities between developing and developed countries may become greater. By addressing genetic health care needs and specific differences of developing countries, these disparities may be mitigated. We sought to describe the attitudes and knowledge of subjects with hereditary neurological diseases in Mali before and after receiving genetic testing and counseling for the first time. A questionnaire of attitudes and knowledge items was adapted and piloted for use in Mali. We found that the majority of subjects had positive attitudes toward genetic testing and counseling, both before and afterwards. Subjects responded to approximately half of the knowledge questions regarding hereditary transmission correctly before and after genetic testing and counseling. Neither overall attitudes nor knowledge scores changed significantly from baseline. Concerns about confidentiality were expressed by the majority of subjects. These findings indicate that, despite limited knowledge of patterns of inheritance, Malians understood the sensitive nature of this information and were favorable toward receiving genetic testing and counseling for diagnostic and prognostic purposes.</p></abstract><kwd-group><title>Keywords</title><kwd>Genetic testing</kwd><kwd>Genetic counseling</kwd><kwd>Developing countries</kwd><kwd>West Africa</kwd><kwd>Attitudes</kwd><kwd>Knowledge</kwd></kwd-group><custom-meta-group><custom-meta><meta-name>issue-copyright-statement</meta-name><meta-value>© Springer-Verlag 2011</meta-value></custom-meta></custom-meta-group></article-meta></front></pmc></record>Pour manipuler ce document sous Unix (Dilib)
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