Underrepresented Populations Working Group
Lack of diversity is one of the critical challenges that the genetics field must overcome. To date, approximately 80% of all genome-wide association studies (GWASs) have been conducted in non-Hispanic Europeans. For example, Asians constitute 60% of the world population, but are represented only in 10% of the samples investigated. Latinos represent less than 0.5%, and for Africans, the number is even lower. These differences limit our insights into disease mechanisms and, importantly, create inequalities when newer diagnostic and therapeutic approaches are developed based on genetic information.
Our mission is to join forces to increase representation and decipher the genetic factors associated with Parkinson’s disease (PD) in non-European populations. We will promote recruitment of persons with PD and ethnically matched healthy controls from underrepresented populations. To add to the Monogenic working group’s efforts, we will identify multiplex families from underrepresented populations, and together with the Data Analysis working group we will help develop the analysis tools necessary to deal with our different and complex genetic admixture. We aim to build resources in the participating countries, including physical resources such as biobanks and training opportunities for local junior researchers. Alongside this we will include researchers, especially junior, to be actively involved in all analyses.
You can also find more information about each of the initiatives working with the working group on the IPDGC-Africa website, the IPDGC-East-Asia website, and the LARGE-PD (Latin America) website.
Working Group
Co-lead, Mongenic Portal Development & Underrepresented Populations East Asia
Shen-Yang Lim, MBBS, MD, FRACP, FASc
University of Malaya | Malaysia
Co-lead, Underrepresented Populations Africa
Olaitan Okunoye, MSc,
Africa University College London | United Kingdom
Co-lead, Underrepresented Populations Latin America
Artur Francisco Schumacher Schuh, MD, PhD
Universidade Federal do Rio Grande do Sul | Brazil
Working Group Participant
Bashayer Almubarak, PhD
King Faisal Specialist Hospital and Research Center | Saudi Arabia
Co-lead, Training and Networking
Sara Bandres-Ciga, PharmD, PhD
National Institutes of Health | USA
Co-Lead Monogenic Sample Prioritization
Soraya Bardien, PhD
Stellenbosch University | South Africa
Co-lead, Complex Disease Cohort Integration
Hirotaka Iwaki, MD, PhD
Data Technica International / National Institutes of Health | USA
Working Group Participant
Rejko Kruger, MD
Luxembourg Centre for Systems Biomedicine | Luxembourg
Working Group Participant
Prashanth Lingappa Kukkle, PhD
Center for Parkinson's Disease and Movement Disorders, Manipal Hospital | India
Working Group Participant
Kin Mok, MBBS, FRCP(E), PhD
University College London | United Kingdom
Lead, Training and Networking
Alastair Noyce, MRCP, PhD
Queen Mary University of London | United Kingdom
Milestones
Progress so far
- Published an article about underrepresented populations in PD genetics research (ref pmid: 35867623)
- Published as a preprint the first multi-ancestry genome-wide meta-analysis in PD (ref: doi.org/10.1101/2022.08.04.22278432)
- Supported ongoing recruitment in Africa, India, Latin America, and among underrepresented populations in the US and UK, as well as supported new initiatives like the Central Asia and Transcaucasia PD initiative (CAT-PD)
- Started preliminary GWAS analysis in East Asia and Africa
- Supported the Training Working Group in offering training opportunities to researchers from underrepresented populations and fostered young researchers to engage in the trainee network
Remaining Year 3 Goals
- Conduct a survey about unprofessional peer review and barriers to publish
- Identify barriers to genetic testing in countries with predominantly underrepresented populations
- Encourage URP researchers to submit project analysis proposals to GP2
- Support underrepresented research groups in recruitment and analysis
- Identify and engage with new URP sites that are not currently represented in GP2
Contact Us
For any questions or new potential under-represented cohorts please contact: [email protected]