Genetic testing and counseling for hereditary neurological diseases in Mali
Genetic testing and counseling for hereditary neurological diseases in Mali
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DOI：
10.1007/s12687-011-0038-0
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发表时间：
2011-03-01
影响因子：
1.9
通讯作者：
Han, Hae-Ra
中科院分区：
文献类型：
--
作者：
Meilleur, Katherine Gloria;Coulibaly, Souleymane;Han, Hae-Ra
随着遗传学的进步被纳入保健服务，发展中国家和发达国家之间的差距可能会扩大。通过解决发展中国家的遗传保健需求和具体差异，这些差距可能会缩小。我们试图描述马里遗传性神经系统疾病受试者在首次接受基因检测和咨询之前和之后的态度和知识。对一份关于态度和知识项目的调查表进行了改编，并在马里试用。我们发现，大多数受试者对基因检测和咨询的态度是积极的，无论是之前还是之后。受试者在基因检测和咨询前后正确回答了大约一半关于遗传传播的知识问题。总体态度和知识得分与基线相比均无显著变化。大多数受试者对保密问题表示关切。这些研究结果表明，尽管对遗传模式的了解有限，但马里人理解这一信息的敏感性，并有利于接受基因检测和咨询，以进行诊断和预后。
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.