Genetic testing and counseling for hereditary neurological diseases in Mali
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
- Green MJ, Peterson SK, Baker MW, Harper GR, Friedman LC, Rubinstein WS et al (2004) Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: a randomized controlled trial. JAMA, J Am Med Assoc 292(4):442–452CrossRefGoogle Scholar
- Leplege A, Schemann JF, Diakite B, Toure O, Ecosse E, Jaffre Y et al (2006) A new condition specific quality of life measure for the blind and the partially sighted in sub-Saharan Africa, the IOTAQOL: methodological aspects of the development procedure. Qual Life Res 15(8):1373–1382PubMedCrossRefGoogle Scholar
- Sickle Cell Anaemia. 2006. Report by the Secretariat. World Health Organization. 59th World Health Assembly.Google Scholar
- Waltz CF, Strickland OL, Lenz ER (eds) (2004) Measurement in nursing and health research, 3rd edn. Springer, New YorkGoogle Scholar