Increasing diversity in genomics requires investment in equitable partnerships and capacity building

We started NeuroGAP-Psychosis with the acknowledgment that resources and infrastructure are inherently imbalanced between researchers from high-income countries and LMICs. Our group dedicated time, resources, education and training to counteract imbalances in the limited ways that we could. From the outset, we agreed that success was to be measured not only by the data collected, papers published or scientific discoveries; Discussions were equally focused on sustainability, capacity building and infrastructure. This required funding flexibility and has led to earlier, unanticipated and wider-reaching benefits beyond our research goals.

Wet lab capacity

Research partners across the five recruiting institutions each had very different wet-lab capacities when protocols were being developed. A major aim was to expand research capacity to support each wet lab to do most work locally, including sample collection, extraction and storage. This goal has been met, with only small aliquots of DNA needing to be sent to the Broad Institute, the only participating institution with facilities currently capable of sequencing tens of thousands of genomes. Members from the Broad Institute’s Genomics Platform traveled to study sites to meet with laboratory staff, review research protocols, streamline organizational methods, assist in developing standard operating procedures and ensure that best practices were being followed in the lab. The goal was not to make each lab equal, but to candidly determine what the project could do to facilitate success by helping each lab advance.

For Moi Teaching and Referral Hospital in Eldoret, Kenya, that meant providing training on how to use a NanoDrop spectrophotometer, funding MS and PhD student research and discussing sample tracking (ie, chain of custody) options. Sam Pollock from Broad’s Genomics Platform visited multiple collaborating wet labs and described sample tracking as an area of ​​focus in the absence of a robust laboratory information management system (LIMS). After he had shadowed lab members, they discussed and settled on best practices including using printed Excel tracking sheets, numbering Eppendorf tubes and assigning responsibility when recording sample accession.

For Addis Ababa University (AAU) in Addis Ababa, Ethiopia, that meant streamlining lab work flows and assisting with procurement hurdles. Creating freezer maps provided an organizational tool for use across multiple groups, which simplified communication and reduced the risk of samples breaking the cold chain. Although AAU did not have a LIMS, risk of sample swaps was mitigated through visual management, sample batching and use of Excel formulas as verification tools. NeuroGAP-Psychosis funding helped establish the first biobank in Ethiopia at the College of Health Sciences at AAU through lab support and funding for freezers. An unanticipated benefit was also the support it provided to PCR test patients for SARS-CoV-2.

Annual general meetings

Before the pandemic, we held in-person annual general meetings (AGMs). Unlike in many other scientific consortia that involve only principal investigators and a few analysts in these meetings, key project personnel spanning all career stages, including principal investigators, research assistants, Scientific Advisory Board members, GINGER fellows, wet lab staff and project managers, attended the meetings and engaged in critical discussions. The AGMs were designed to advance research, provide training and enable discussion of strategies and goals for the next year. Beyond this, they established and built persistent relationships among a network of 100+ researchers, clinicians, ethicists and staff across all sites. These unique benefits made them well worth the many logistical and administrative hurdles, hefty financial costs, time and effort involved. To quote a principal investigator and author, Dickens Akena of Makerere University in Uganda, summarizing the value of the AGMs: “There is something about meeting with people you work with that is so indescribable—something you look forward to. There is always something new, something to learn, an opportunity to get better and to improve careers. The unpredictability is constant.”

The AGMs propel NeuroGAP-Psychosis forward by creating an atmosphere conducive to sharing ideas on a more personal level. Discussions involved sharing experiences between teams, identifying and surmounting challenges, preliminary data analysis, data generation strategies15mentoring GINGER fellows and showcasing their work, clinical training needs surrounding patient interactions, funding opportunities and ethical challenges16. They also built camaraderie from shared experiences not possible over conference calls. Most importantly, AGMs gave junior researchers opportunities to meet and partner with senior researchers from other institutions and consortia. The AGM itself typically occupies only 1-2 days, but there are also many adjacent meetings and retreats, including GINGER training sessions, African Ethics Working Group meetings and project manager retreats.

Team building and engagement via project manager retreats

Project managers arrived in the host country a few days before the AGM to see firsthand how other clinics worked and improve their own workflows locally; they also met and discussed all areas of research operations, including recruitment strategies, sample tracking and shipping logistics. Project manager training sessions were often led by project managers themselves in areas in which they were subject matter experts, with the US team only facilitating. Project managers learned how other clinics and teams at different sites operated and had candid discussions on, for example, how best to approach patient interactions, assess inter-rater reliability, interpret data trends, ensure the highest data quality, supervise and mentor their research assistants , and what to do when the technology inevitably breaks. These training sessions provided opportunities to standardize administering phenotyping tools, adhering to updated research protocols and overcoming common challenges across all sites. Talking through successes and challenges faced by all project managers fostered lasting relationships.

Project manager and author Stella Gichuru at Moi University describes how this cohesion aided the project practically: “Whenever one project manager faced a challenge, there was great team spirit and cooperation in resolving that matter as a project manager team. We would come together, either in the annual project manager meetings or through our WhatsApp group, to ensure uniformity in operations across all sites.” For example, she described training in using the Mini International Neuropsychiatric Instrument (MINI) for conducting structured diagnostic interviews as a major focus of the project manager retreat in 2018. Beforehand, each project manager had their own understanding of the MINI, but through discussions and role plays, they left with a uniform understanding that they then passed to research assistants (Fig. 2). Melkam Kebede, the project manager from AAU and a GINGER fellow and author, felt that these project manager retreats allowed participants to see the ‘bigger picture’, outside the typical day-to-day operations of running a data collection team in their own country , and provided the chance to hear and work through problems that other sites were facing.

Fig. 2: Project manager Stella Gichuru discusses NeuroGAP-Psychosis with research assistants.

From left to right: Fredrick Ochieng, Eunice Menjo, Stella Gichuru and Wilberforce Ndenga. Photo credit: Russell Murachver.

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