Comparing knowledge and attitudes towards genetic testing in Parkinson's disease in an American and Asian population

IntroductionRecent discoveries of disease-causing genes in Parkinson's disease (PD) have generated considerable interest regarding genetic testing in PD. The attitudes toward genetic testing are largely influenced by knowledge and preconceived notions.ObjectiveWe investigated the relationship between knowledge of and attitude towards predictive genetic testing of PD in two independent centers in America and Asia involving PD patients and caregivers.MethodsIn a prospective study involving 515 subjects comprising of PD patients and their caregivers in two independent centers in America and Asia, the level of knowledge about genetic testing and patients' attitudes towards such testing were evaluated using a standardized questionnaire.ResultsAmerican PD patients had a higher level of knowledge of PD genetics than Asian PD (31.1% vs. 12.3%, p = 0.0002). A greater number of American PD patients and caregivers reported a positive attitude towards the potential medical benefits of genetic testing compared to their Asian counterparts (85.4% vs. 42.2%, 92.2% vs. 32.1%, p < 0.00005), but a more negative attitude towards potential compromise in getting health and life insurance (43.7% vs. 25.8%, p = 0.0002). However, in the Asian cohort, multivariate analysis revealed that a high level of genetics knowledge was associated with a positive attitude response regarding the potential medical benefits of testing (p < 0.0005), but a negative attitude towards compromises in healthcare and life insurance, getting a job and starting a family (p < 0.0005). These associations were not observed amongst American subjects.ConclusionsThe relationship between level of genetic knowledge and attitude towards potential risks and benefits of predictive genetic testing in PD was distinctly different in two independent, racially and culturally different PD populations and caregivers. These observations have clinical implications in the development of PD genetic counseling programs.