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

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We launched NeuroGAP-Psychosis recognizing that resources and infrastructure are inherently unbalanced between researchers in high-income countries and LMICs. Our group has dedicated time, resources, education and training to counter the imbalances in the limited way we could. From the start, we agreed that success shouldn’t just be measured by data collected, papers published, or scientific findings; discussions also focused on sustainability, capacity building and infrastructure. This required funding flexibility and led to far-reaching, unanticipated, prior benefits beyond our research goals.

Wet Lab Capacity

The research partners at the five recruiting institutions each had very different wet laboratory capabilities when developing the protocols. One of the main goals was to expand research capacity to help each wet lab do most of the work locally, including sample collection, extraction and storage. This goal was achieved, with only small aliquots of DNA needing to be sent to the Broad Institute, the only participating institution currently with facilities capable of sequencing tens of thousands of genomes. Members of the Broad Institute’s Genomics Platform traveled to study sites to meet with laboratory staff, review research protocols, streamline organizational methods, assist in the development of standard operating procedures and ensuring that best practices were followed in the laboratory. The goal was not to make every lab equal, but to candidly determine what the project could do to facilitate success by helping each lab move forward.

For Moi Teaching and Referral Hospital in Eldoret, Kenya, this meant providing training in the use of a NanoDrop spectrophotometer, funding research for MSc and PhD students, and discussing options for monitoring samples (i.e. chain of custody). Sam Pollock of the Broad Genomics Platform visited several collaborating wet labs and described sample tracking as an area of ​​concern in the absence of a robust laboratory information management system (LIMS). After shadowing lab members, they discussed and agreed on best practices, including the use of printed Excel tracking sheets, Eppendorf tube numbering, and assigning responsibilities when recording sample procurement. .

For Addis Ababa University (AAU) in Addis Ababa, Ethiopia, this meant streamlining lab workflows and helping overcome supply bottlenecks. Creating freezer maps provided an organizational tool to use across multiple groups, which simplified communication and reduced the risk of samples breaking the cold chain. Although the AAU does not have a LIMS, the risk of sample swapping has been mitigated through visual management, sample grouping, and the use of Excel formulas as verification tools. NeuroGAP-Psychosis funding helped establish the first biobank in Ethiopia at the AAU College of Health Sciences through laboratory support and freezer funding. An unintended benefit was also the support it provided to PCR test patients for SARS-CoV-2.

Annual general meetings

Before the pandemic, we held annual general meetings (AGMs) in person. Unlike many other scientific consortia that only involve principal investigators and a few analysts at these meetings, key project personnel spanning all career stages, including principal investigators, research assistants, members of the scientific advisory board, GINGER fellows, wet lab staff and project leaders, attended meetings and engaged in critical discussions. The AGMs were designed to advance research, provide education and allow discussion of strategies and goals for the following year. Beyond that, they established and built enduring relationships within a network of over 100 researchers, clinicians, ethicists, and staff across all sites. These unique benefits were well worth the many logistical and administrative hurdles, high financial costs, time and effort required. To quote lead researcher and author, Dickens Akena of Makerere University in Uganda, summarizing the value of AGAs: “There is something so indescribable about meeting the people you work with, something you expect impatiently. There is always something new, something to learn, an opportunity to improve and improve your career. The unpredictability is constant.

AGMs propel NeuroGAP-Psychosis by creating an atmosphere conducive to sharing ideas on a more personal level. Discussions focused on sharing experiences between teams, identifying and resolving challenges, preliminary data analysis, data generation strategies15mentor GINGER Fellows and present their work, clinical training needs surrounding patient interactions, funding opportunities, and ethical challenges16. They also built camaraderie from shared experiences not possible on conference calls. Most importantly, the AGAs gave junior researchers the opportunity to meet and associate with senior researchers from other institutions and consortia. The AGM itself usually takes only 1-2 days, but there are also many adjoining meetings and retreats, including GINGER training sessions, African Ethics Task Force meetings and Chiefs retreats of project.

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 were operating and to 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 the project managers themselves in areas in which they were subject matter experts, with the US team only facilitating. Project leaders learned how other clinics and teams at different sites operated and had candid discussions about, for example, how best to approach patient interactions, assess inter-rater reliability, interpret data trends, ensure the highest quality of data, supervise and mentor their research assistants. , and what to do when technology inevitably breaks down. These training sessions provided opportunities to standardize the administration of phenotyping tools, adhering to updated research protocols and overcoming challenges common to all sites. Talking about the successes and challenges faced by all project managers fostered lasting relationships.

Project manager and author Stella Gichuru of Moi University describes how this cohesion helped the project in practice: “Whenever a project manager faced a challenge, there was great team spirit and cooperation to solve this problem as a team of project managers, we meet, either during the annual meetings of the project managers or via our WhatsApp group, to ensure uniformity of operations across all sites. , she described training in the use of the Mini International Neuropsychiatric Instrument (MINI) for conducting structured diagnostic interviews as a major focus of the project managers’ retreat in 2018. Previously, each project manager had their own understanding of the MINI, but through discussions and role-playing, they came away with a uniform understanding which they then passed on to the research assistants (Fig. 2) Melkam Kebede, AAU project manager and fellow r and author of GINGER, felt that these project manager retreats allowed participants to see the bigger picture, outside of the typical day-to-day operations of managing a data collection team in their own country. , and made it possible to hear and resolve issues that other sites were facing.

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

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

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