In a groundbreaking discovery earlier this year, a global consortium found a new variant in the GBA gene that is associated with a higher risk of Parkinson’s disease (PD) for people of African ancestry. The finding marks the first African ancestry-specific genetic risk factor for Parkinson’s disease. In this podcast, researchers share the human stories behind the discovery, which underscores the importance of international collaboration and the participation of underrepresented communities in research.  

Themes covered in this discussion: 

• (02:05) – Breaking down the genetic discovery and why it’s important for PD research 
• (05:27) ­– More on the genetic samples that resulted in this discovery 
• (06:53) –Why the GBA1 gene is of interest and its connection to PD 
• (11:13) – How the Global Parkinson’s Genetics Program (GP2) maintains privacy and confidentiality of data from study participants 
• (13:15) – How people should think about genetics as a risk factor for PD 
• (14:55) – Capacity building and building community trust 
• (19:57) –Why this discovery takes us closer to finding better treatments and a cure for PD 
• (21:51) – Story behind accidental discovery of GBA1 variant 
• (22:50) – Background on GP2 and excitement on the GBA1 variant discovery 
• (33:17) – Ethnicity and health risk factors and other determinants of health 
• (35:03) – Importance of diversity, equity and inclusion in science and to The Michael J. Fox Foundation’s mission 
• (36:52) – Research in PD historically focused on people of Northern European ancestry  
• (38:09) –Why people from underrepresented groups need to lead these studies 
• (39:30) – Importance of including underrepresented populations across the research pipeline 
• (40:18) –Why research participation is important and how you can get involved 

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Whether you have Parkinson’s or not, you can help move research forward. Join the study that’s changing everything. Find out more at michaeljfox.org/podcast-ppmi 

Mentioned in this episode:

Our landmark study is examining the link between smell loss and risk for Parkinson’s disease in people of all backgrounds. If you’re age 60 or older and do not have Parkinson’s, you can help move this research forward by taking a free scratch-and-sniff test. Get yours today at mysmelltest.org/request.