Genetic literacy and attitude towards genetic testing in patients with Parkinson's disease and their caregivers: A review of literature.

BACKGROUND: Genetic literacy refers to an individual's ability to understand the basics of genetic concepts and apply them to health-related decisions. The level of genetic literacy influences attitude towards genetic testing and is, in turn, influenced by several other factors. Clinicians must be aware of the genetic literacy of their patients and their caregivers before advising genetic testing and/or undertaking pre and post-test counseling.

METHOD: A systematic review of literature in PubMed was carried out using keywords "Genetic testing", "Genetic counseling", "Knowledge", "Attitude", "Parkinson's disease" in various combinations.

RESULTS: Seven eligible studies with a total of 1837 individuals (patients with PD-1355 and patient caregivers-482) were identified. More than half the participants were well-versed in basic concepts of genetics (57.8%) and risks of inheriting PD (60.5%) while less than 10% were aware regarding the contribution of specific genes (e.g. LRRK2). Interest in diagnosis, treatment, prevention and facilitating PD research were central themes for positive attitude while apprehensions revolving around impact on employment and insurance and non-benefit were associated with negative attitudes. Possible associations included greater knowledge scores with positive attitudes towards genetic testing and older age for negative attitude towards testing. Insufficient data on attitudes toward prenatal testing, presymptomatic testing and clinicians' attitude toward testing was identified.

CONCLUSION: Patients with PD and their caregivers are aware of the role of genetics in the etiopathogenesis of their disease, which contributes to their positive attitude towards testing. Further studies exploring negative attitudes towards testing will help overcome the hurdles in genetic testing and counseling in this cohort of patients.