Worldwide barriers to genetic testing for movement disorders.
Emilia M Gatto1, Ruth H Walker2,3, Claudio Gonzalez4
1Department of Neurology, Affiliated University of Buenos Aires, Buenos Aires, Argentina.
Global access to genetic testing for movement disorders is limited, with significant disparities between regions. Financial barriers and lack of genetic specialists contribute to these challenges, hindering utilization of genetic diagnostics.
Area of Science:
- Neurology
- Genetics
- Medical Diagnostics
Background:
- Genetic variants are crucial for understanding neurological diseases.
- Clinical practice often faces limitations in accessing genetic testing.
Purpose of the Study:
- To evaluate worldwide access to genetic tests for movement disorders.
- To identify factors influencing the utilization of genetic testing.
Main Methods:
- An online survey was distributed to 7815 members of the International Parkinson and Movement Disorder Society.
- Data from 1269 participants across 109 countries were analyzed.
Main Results:
- Limited access to geneticists and genetic counselors was reported globally, especially outside Europe and North America.
- Genetic testing availability was below 50% in many regions, with significant disparities for parkinsonism, dystonia, ataxia, and other disorders.
- Free genetic testing was most common in Europe, with lower rates in other regions, indicating financial barriers.
Conclusions:
- Significant global challenges exist in accessing genetic testing and expertise for movement disorders.
- Disparities in genetic testing access are evident across world regions, influenced by factors like cost.
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