Genetic testing and counseling for hereditary neurological diseases in Mali
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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.
KeywordsGenetic testing Genetic counseling Developing countries West Africa Attitudes Knowledge
The contents of this publication are solely the responsibility of the authors and do not necessarily represent the official view of the National Institutes of Health. We thank the patients and families for their participation and patience and express our gratitude to the many experts who contributed invaluable insight, including Dr. Gail Geller, Dr. Peter Winch, Dr. Marie Diener-West, Dr. Elizabeth Thomson, Dr. Lori Leonard, Mr. Donald Hadley, Dr. Benjamin Wilfond, and Dr. Kevin Flanigan. We also thank the Medical School and the Hospital of Point “G”, Bamako, Mali. The work was supported by funds from the NINDS and NINR intramural programs.
Conflicts of interest
The authors declare that they have no conflict of interest.
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