Hello everyone,
Recently, I was invited to co-author a review article on the importance of diversity in PD research and, as of now, the manuscript is under review. I thought I’d take a moment to share a few key insights we uncovered during the writing process, as this topic has really stayed with me.
One of the most striking things we found is how much of PD research is still concentrated in high-income countries, both in terms of funding and participant representation. This is despite the fact that nearly half of all people with PD already live in low- and middle-income countries and that number is expected to grow substantially in the coming decades.
We also looked at PD genetics, and the lack of diversity there is even more concerning. Over 90% of participants in GWAS so far have been of European ancestry. This matters because ancestry-specific risk variants are being missed. One example is a GBA1 variant found in 39% of PD cases of African ancestry. This finding required far fewer participants than similar discoveries in European populations.
Environmental exposures are another area where gaps are evident. While many LMICs face increasing exposure to pesticides, air pollution, and industrial chemicals, most environmental PD studies come from the Global North. Finally, the underrepresentation in clinical trials also exist as many individuals simply don’t have access to experimental treatments. In some major PD trials, less than 2% of participants were Black, and many LMICs are not even included in global recruitment efforts.
All of this reinforces what I believe many of us already know: without broader representation, our science remains incomplete. And we need to work towards more inclusivity in PD research!
I Would love to hear if others here have also worked on this topic or are seeing efforts to bridge these gaps in your institutions or countries.