Health
Genetics & Genomics Research Dissemination; Makerere Bioethicists Emphasize the Importance of Community Engagement
By Joseph Odoi
As Genetics research continues growing in Uganda, Bioethicists from Makerere University College of Health Sciences have stressed the importance of community engagement, genetic counselling and Public sensitization when conducting Genetics research in Uganda.
These recommendations were made at a research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.
While presenting findings of the ELSI-UG project titled “Ethical and social issues in informed consentprocesses in African genomic research”, the Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki from College of Health Sciences, Makerere University in a special way welcomed participants to the dissemination. He noted that involving communities in genetics and genomics research is very important when it comes to enhancing the understanding of genetics and genomic information by the general public.
‘’There has been an exponential increase in genetics and genomic research in the last two decades.
However, this field of research is complex and is poorly understood by various research stakeholders. One way of enhancing understanding of genetics and genomic information by the general public is through community engagement. It is therefore crucial that communities are meaningfully involved in research processes right from conception. Community engagement provides a two-way communication channel through which researchers gain better understanding of community priorities, preferences, traditions, practices, and cultural sensitivities.’’ explained Prof. Mwaka.
He equally highlighted the need for translation of scientific language into local languages, genetic counsellors and consent in Genetics research adding that community engagement is crucial in building equitable research collaborations and trust between researchers and research communities.
Genetic and Genomics
According to National Institute of General Medical Sciences, Genetics is the scientific study of genes and how certain qualities, conditions or traits are passed from parents to their off springs. Genomics on the other hand involves using information about genes to: identify genetic disorders including future diseases so that doctors tailor treatment for individuals.
In same spirit, Dr. Moses Ochan, the Vice Chairperson of the Makerere University Research and Ethics Committee stressed the importance of sensitization of communities and researchers before any study is undertaken. According to him, sensitization enables communities understand the advantages and disadvantages of participating in a study thus making informed decisions.
In this United States National Institutes of Health funded study that sought to explore the knowledge,perceptions and experiences of stakeholders; researchers, bioethicists, REC members, research participants and caregivers/guardians on the informed consent process, and the ethical, legal and social implication of genomic research, 243 protocols were analyzed involving both local and international researchers
Findings
Return of individual genetic results to research participants
- Of 122 parents/caregivers of adolescents in the study, 77.1 % expressed the desire to receive all results of their children’s genetic/genomic results.
- 71.3 % of parents/caregivers agreed that children should be able to take part in research testing for genetic conditions that begin during childhood, even if there is no treatment that can alter the course of the condition
- 85.3 % of parents/ caregivers expressed the desire to know genetic research results about children to see if they are more likely to get a disease in the future.
- 71.3 % of parents/ caregivers agreed that Children should be able to take part in research testing for genetic conditions for which there is a treatment that begins during childhood that can alter the course of the condition
- 62.3 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that start in adulthood and have no treatment that can alter the course
- 89.4 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that will arise in their adult years, only if there is treatment or prevention that should begin in childhood
On the most important issues parents should consider in deciding whether or not to get genetic research results, 81.2% cited distress knowing that there are potential problems for other family members. Additionally, 45.0 % of parents and caregivers noted that receiving their child’s genetic results might worry their family; and 27.8% worried about stigma and discrimination
To address this, 69.2 % of parents and care givers said genetic counselling should be offered prior to a sample being taken to do genetic research
On perceptions on returning individual results of genomic research, parents and caregivers indicated that It is the researchers’ moral obligation to return clinically significant results; as such, genetic results should be communicated to them by the study doctor. Most parents preferred being informed first before involving the children; and some mothers expressed the desire to exclude the child’s father from these discussions until they (mothers) have understood the implications of the results in question.
On the role of children in making decision makings on whether to regarding return of genetic results or not, there was no consensus on the ideal age for disclosure of results. Some parents and caregivers pointed out that involvement of children in these discussions should depend on child’s character, level of understanding and ability to cope with the implications..
On handling findings that have familial implications, there were mixed feelings about involving other family members. Parents, especially mothers expressed fear of attribution. They thus suggested that the biological parents of the child should be the first ones to receive these results and then decide whether to involve other family members.
On the perceived challenges to return of results, parents and caregivers cited protracted delays in communicating genetics/genomics results; difficulty in tracing the child’s family, especially when the parents die and they are being cared for by other caregivers; risks of knowing unpleasant findings and paternity disputes.
Parents and caregivers offered several suggestions for the safe return of results of paediatric genomic research and these included the need to organize peer support and sensitization activities for adolescents participating in genetic studies; feedback of results should be done by a multidisciplinary team comprising of clinicians, genetic counsellors, the child and parents. All concurred that other family members should be involved at a later stage.
Informed consent and sharing of biological samples in collaborative genomic research and biobanking
On consent to future use of samples, 88.8% of the 187 researchers that participated in the study indicated that there is need to provide donors with the option to consent. 62% indicated that informed consent forms should include multiple options regarding the types and conditions of future research for which the samples may be used (tiered consent). 6.2% said that participants should only consent for the current study, and any future studies on the stored samples would require re-consent. However, the majority of researchers felt that the need to reconsent places an unacceptable burden on the researchers (62%) and is prohibitively costly (59.4%)
On informed consent experiences and practices, it was found that most principal investigators (12/15) were not well conversant with the informed consent procedures of their respective studies because they delegate this to study coordinators and nurses/nurse counsellors. Most nurses/nurse counsellors lacked basic knowledge and understanding of genetics, including the risks of genetic research.
On Information disclosure, researchers noted that genetic research is complex and oftentimes research participants do not adequately understand the information disclosed them during the consenting process. They thus recommended the use of an iterative approach that encourages consultation with family and/or people research participants trust, use of simple language, use of visual aids and other media, and objective assessment of comprehension. The also reiterated the need for translating informed consent documents into local languages and the use of peer educators. Researchers emphasized the role of community engagement in community education and sensitization, ensuring that researchers respect local cultural values and beliefs, and dispelling of superstitions and misinformation.
- The perceived challenges to the informed consent process included, the poor quality and inaccuracy of translations of ICF into local languages, inadequate understanding of informed consent, limited understanding of genetics by communities and some research team members, lack of professional genetic counselling services in Uganda, and mistrust of foreign collaborators.
On Export of human biological materials (HBM), researchers had a positive attitude towards the export of samples and expressed a desire for collaborative partnerships in genetics/genomic research and bio banking that are characterized by mutual respect and equity. However, they raised several concerns:
- They seem not to be well conversant with the guidance provided by the national ethics guidelines on bio banking and
- They all concurred that material transfer agreements (MTA) are key in the transfer of human biological materials across the national borders. However, they surmised that these MTA are unfair and tend to favour international Collaborators. They felt that local researchers and research institutions are not empowered enough to bargain favorably during MTA negotiations. They also indicated that the national ethics guidelines are vague on role of RECs in MTA and data sharing agreement development. Furthermore, they indicated that Uganda lacks appropriate enabling ethical and legal frameworks to protect the interests of local scientists and research institutions
- On sharing of the benefits of research, the researchers felt the ground was not leveled and there was neither equity nor fairness in sharing of GBR benefits in international collaborative research. They attributed this to the lack of scientific integrity and questionable research practices by collaborating researchers, lack of effective communication between collaborating partners, denial of access to shared data and samples by Northern collaborators, and felt that the oversight function of UNCST during MTA implementation is limited.
To address the issues at hand around genetics and genomics research, they made the following recommendations;
Recommendations to enhance comprehension of informed consent for genetic/genomic research and biobanking
- Escalating community engagement: to sensitize the general public and educate them on genetics research and its implications
- Iterative approach to informed consent where participants are given ample time to read/be read to consent information, ask questions, make consultations with family and trusted persons
- Encouraging the use of simple language and various media during information disclosure.
- There is need for harmonization of translations. A dictionary of translated key scientific and medical terms/concepts in research and clinical care in local languages should be developed
- Develop specific national guidelines for genetic and genomic research in Uganda.
- Research ethics committees should be trained in the basics of genetic research in order to ensure that they appreciate the ELSI and are competent enough to review genetic research.
- The use of checklists for assessing understanding of consent should become mandatory and should also be included in the national ethics guidelines.
- All stakeholders should read and understand the available national and international guidelines, policies, and regulations pertaining to genetics/genomic research and bio banking before negotiating Material transfer agreements.
- Research ethics committees should be empowered to review and monitor the execution of MTAs during research implementation, and this should be clearly stipulated in the national ethics guidelines.
- The national research regulators and individual institutions should join forces and devise mechanisms for tracking and monitoring the use of exported HBM and data.
- Encouraging meaningful involvement of communities in Material transfer agreements negotiations, particularly regarding sharing of the benefits of research.
- There should be capacity building for clinical genetics, particularly clinical geneticists and professional genetic counsellors
- Community engagement activities should be scaled up to prepare communities for the return of genetic research results as and when they are available
More about the Project
This project explored the knowledge, perceptions and experiences of stakeholders on the informed consent process, and the ethical, legal and social implication of genomic research. The goal of the project was to contribute to a better understanding of the ethical legal and societal issues associated with genomic research in low resource settings. The study employed both quantitative and qualitative methods of data collection and analysis. Prospective evaluation was done using questionnaire surveys; focus group discussions; in-depth interviews; direct observation of informed consent processes; and assessment of the quality of informed consent
This study was funded by United States National Institutes of Health through The Human Heredity and
Health in Africa (H3Africa) initiative which is spearheading bio banking and genomics research in Africa for Africa.
The study was conducted between November 2018 to 2022 by a team of researchers led by Associate Prof. Erisa Mwaka as Principal Investigator.
Research team:
- Associate Prof. Erisa Mwaka
- Dr. Ian Munabi
- Assoc. Prof. Joseph Ochieng
- Dr. Janet Nakigudde
- Prof. Nelson Sewankambo
On August 20, 2025, Makerere University School of Public Health (MakSPH) convened a timely workshop on Strengthening Equitable Partnerships in International Research Collaboration in Uganda. Held at the MakSPH Auditorium, the event brought together researchers, policymakers, and institutional leaders to reflect on how Uganda, and indeed the wider region, can engage more effectively and derive greater benefit from global research collaborations.
Delivering the keynote address, Prof. David Musoke Serwadda, a Professor Emeritus at Makerere University and a globally recognised HIV researcher and epidemiologist, urged a rethinking of how international research partnerships are structured. A former head of the Institute of Public Health (IPH) and later Dean of the School, serving between 2003 and 2009, Serwadda is also the founding director of the Rakai Health Sciences Programme (RHSP), which is one of Uganda’s most influential research initiatives on HIV. While acknowledging the many benefits Uganda has gained from global research collaborations, he cautioned that too many times, these partnerships remain transactional, shaped by donor priorities, bound to project cycles, and offering limited long-term value to local institutions once projects close.
Prof. Serwadda, himself a globally recognised and well-accomplished researcher, with over four decades of experience and numerous awards for his contributions to science and global health, observed that Ugandan partners are many times included in research projects for visibility rather than substance, often excluded from core roles such as Principal Investigators or from influencing agenda-setting, budget control, and authorship. “Partnerships are not an end in themselves; they exist to help us achieve mutually agreed objectives built on shared responsibility and reciprocal obligations. Too often, Southern institutions are brought into projects late, simply for optics. That is not equitable collaboration,” he insisted.
During his talk, he stressed that this imbalance undermines both research quality and sustainability, noting that normally, when local researchers are sidelined, studies often fail to align with national priorities or build capacity that endures. By contrast, partnerships that are grounded in mutual respect, fair resource sharing, co-design, and shared decision-making have the impact of producing knowledge that is globally relevant and locally impactful.
“Equity in partnerships is about fairness, ensuring that all partners, regardless of context, can contribute meaningfully. This also requires responsibility on our part in the Global South. We must insist on involvement from project conception, negotiate fair terms, and strengthen our own systems to manage collaborations effectively,” Prof. Serwadda advised, emphasising that strong institutions, clear strategy, agenda and objectives are key for local institutions to engage in mutually fair and beneficial research collaborations at the global and continental stage.
As Director and later Dean of MakSPH, Prof. David Serwadda spearheaded numerous research collaborations and attracted substantial grants that elevated the School and the University’s global standing. Today, MakSPH is recognised as Makerere University’s flagship unit for its wide-ranging partnerships and robust research management systems. Since its beginnings as a small Department of Preventive Medicine in 1954, through its transformation into the first Institute of Public Health in sub-Saharan Africa in 1975, its elevation to School status in 2007, and most recently its reinstatement as a standalone School with college status within Makerere University in January 2025, a status first granted in 2001, MakSPH has built a 70-year legacy of advancing public health through research, training, and policy engagement.
The School’s evolution, as often couched by its leadership, has been anchored on strategic and strong partnerships. These collaborations, be they local, regional or global, have driven health systems innovation, strengthened capacity, and informed policy, making partnerships the cornerstone of the School’s past achievements and future ambitions. At the celebration of the School’s 70th Anniversary, marked in December 2024, Makerere University Vice Chancellor Prof. Barnabas Nawangwe hailed MakSPH’s research output, community impact, and strong partnerships cultivated throughout the years. The Mak VC cited the School’s pioneering role in the HIV response led by Prof. Serwadda in the 1980s, the establishment of nutrition centres such as the Mwana Mugimu Unit at Mulago Hospital and across Uganda by the late Prof. John Kakitahi in the 1990s with support from Rotary International, and community projects like Kasangati Health Centre along Gayaza Road with support from the Rockefeller Foundation in the late 1950s, which advanced public education on healthy environments and wellness.
“The School of Public Health brings in almost half of all research grants at Makerere University, both in number and value, and these partnerships have been central to tackling Uganda’s public health challenges. From pioneering HIV/AIDS work that shaped global prevention strategies to interventions in maternal health, malaria, and infectious diseases, MakSPH has consistently combined academic excellence with community service. Its leadership during the COVID-19 pandemic further showed its ability to respond to national health emergencies with evidence-based solutions that directly benefit the people,” Prof. Nawangwe said with gratitude for the work done by the School through collaboration.
In 2024, the School had over 350 peer-reviewed publications in high-impact international journals as a result of this wide network and partnerships. MakSPH currently maintains a strong mix of North–South and South–South collaborations. Within the continent, the School is actively working in more than 25 countries, often partnering with multiple institutions within individual countries to advance research, capacity building, and policy influence. One such recent collaboration is the Partnership to Enhance Technical Support for Analytical Capacity and Data Use in Eastern & Southern Africa (PERSuADE) Project, funded by the Global Fund. Under PERSuADE, MakSPH, the prime grant recipient, hosted the secretariat led by Dean Prof. Rhoda Wanyenze as Principal Investigator, tasked with overall coordination across 12 countries, while a Steering Committee chaired by Prof. David Serwadda provided oversight.
PERSuADE was implemented in two phases between 2018 and 2023. The project brought together 12 universities and 12 Ministries of Health in East and Southern Africa to strengthen analytical capacity and promote data use in national health programmes, cascading skills to districts and lower facilities. In its second phase, the project trained over 1,500 health staff, including 934 at the sub-national level, in data analysis and use, and generated more than 80 analytical outputs on HIV, TB, and malaria. These informed National Strategic Plans in seven countries and improved programme strategies in all 12. Sixteen in-service staff from seven countries received specialised training in HIV key population surveillance, health information systems, and data use. The project also piloted the Maturity Index Model in five countries, helping ministries track progress in institutionalising data-driven decision-making.
In Uganda, the PERSuADE project was implemented in Kiboga, Buikwe, Kasanda, Mukono, and Mityana districts, selected by the Ministry of Health. According to the Principal Investigator, Prof. Rhoda Wanyenze, strengthening data analysis and use has greatly enhanced the capacity of Ministries of Health to deliver targeted interventions that directly benefit communities. She noted that improved analytical skills at national and subnational levels now enable ministries to identify disparities in HIV, TB, and malaria burdens, while district and facility health workers can use data to strengthen local service delivery. “With better data, districts can plan more efficiently, allocate medicines, and implement tailored prevention campaigns to address specific risks, raise awareness, and reduce new infections,” she said, emphasising the role of equitable collaboration as a key success factor in Uganda and across the continent for this partnership.
Indeed, during a learning visit to Uganda in September 2024, Dr. Estifanos Biru Shargie, Senior Specialist for Monitoring, Evaluation, and Country Analysis at the Global Fund, commended the PERSuADE Project for strengthening local capacity and fostering sustainable health system improvements through South-South partnerships among schools and ministries. “The impact has been significant. In Kiboga, I was impressed by how teams mapped gaps in services and addressed them over four years, using data to inform decisions and monitor progress. Working with Makerere University School of Public Health has been an honour. The School blends academic excellence with practical implementation, backed by strong financial management and a long-standing relationship with the Ministry of Health. Their coordination, networking, and efficiency have been exemplary,” Dr. Shargie said.
Another currently ongoing initiative at the School is the African Leadership and Management Training for Impact in Malaria Eradication (ALAMIME) program, led by MakSPH with ten participating institutions across nine malaria-endemic countries, funded by the Bill & Melinda Gates Foundation. Co-led by Prof. Elizeus Rutebemberwa and Prof. Dosithée Ngo Bebe, ALAMIME is cultivating the leadership Africa needs to defeat malaria by strengthening institutions, building capacity, and fostering regional networks. In 2024 alone, the program trained over 250 participants, nearly half women, from national malaria programs, ministries, and NGOs. Through structured training, alumni-led webinars, and cross-country exchanges, the program has demonstrated how equitable, multi-country partnerships translate investment into sustainable systems and shared momentum toward malaria elimination.
For nearly 15 years now, MakSPH has also hosted the NTU–Mak Partnership, a collaboration between Makerere University and Nottingham Trent University, first conceived in 2010, with Assoc. Prof. David Musoke and Prof. Linda Gibson as the Uganda and UK Co-Leads. One of the key reasons for the success of this partnership is equity, and it has since attracted over £1.4 million in grants, trained more than 900 Village Health Teams in Wakiso District, supported over 350 practitioners in antimicrobial stewardship, and facilitated exchanges for more than 200 students and faculty. It has also equipped community health workers to respond to non-communicable diseases, antimicrobial resistance, and the COVID-19 pandemic, while generating over 30 peer-reviewed publications and convening global platforms such as the first International Community Health Worker Symposium, held in Kampala in 2017.
Dr. Musoke, the Co-Principal Investigator for the project on strengthening equitable research collaborations in Uganda, described the NTU-Mak partnership as a model North–South partnership that has produced both joint scholarship and lasting institutional ties. He noted that its success has inspired wider collaborations, as the current project on equitable partnerships builds on this foundation. Emerging from a British Academy regional workshop in Nairobi in 2024, MakSPH extended its engagement to Mountains of the Moon University (MMU), Uganda Martyrs University (UMU), and the National Agricultural Research Organisation (NARO). Together with Nottingham Trent University, these institutions are now advancing reforms to embed equity in research partnerships across Uganda’s research ecosystem.
Health
Mak and UNICEF Uganda Sign MoU to Strengthen Child Rights through Research, Training, and Innovation
Makerere University (Mak) and United Nations Children’s Fund (UNICEF) Uganda have signed a Memorandum of Understanding that launches a two-year, renewable partnership aimed at advancing child rights and well-being through rigorous research, capacity building, and policy-driven innovation.
The agreement was signed on Thursday, 14 August 2025, by Makerere Vice Chancellor Professor Barnabas Nawangwe and UNICEF Uganda Representative Dr. Robin Nandy in the Vice Chancellor’s Boardroom at Makerere’s Main Building.
The MoU enlists a focused collaboration on generating child-focused data and research to inform policy and program design, analyzing how health, nutrition, education, and protection initiatives affect children, and strengthening the social sector workforce through targeted training, curricula, and performance standards.
It also emphasizes knowledge management, wide dissemination of findings to stakeholders, policy and legislative advocacy for child rights, and active student engagement through internships, skilling opportunities, and communities of practice. The renewed partnership is designed to bolster evidence-based policy-making and drive program improvements that contribute to Uganda’s progress toward the Sustainable Development Goals by 2030.
“The signing of this MoU deepens Makerere’s long-standing commitment to the well-being of Uganda’s children and Africa’s future,” said Vice Chancellor Nawangwe. “I thank Dr. Nandy for his leadership and for the continued collaboration that will expand our capacity to deliver research with immediate, practical benefits for communities.”
UNICEF’s Dr. Nandy stressed that the partnership reflects UNICEF’s global mission to protect and promote every child’s rights while translating research into policy and action. He highlighted Makerere’s proven strength in research leadership as a critical asset in the effort to generate robust evidence for government decision-making and resource allocation.
“This partnership shows our commitment to combine academic knowledge with practical results,” said Dr. Nandy. “Using Makerere’s research skills to create important information about child welfare issues and solutions, making sure that every project we start is based on solid data and aims to safeguard and support children’s basic rights.”
The partnership builds on Makerere University’s established research strengths and UNICEF’s global mandate to protect children. It complements longstanding collaborative work through Mak’s School of Public Health (MakSPH) and other faculties, reinforcing a broader university-wide commitment to evidence-based policy and community impact.
Since 2016, Makerere has participated in more than 30 UNICEF-supported research projects, which emphasize a deep mutual trust and shared mission. The Vice Chancellor noted that this history laid a robust foundation for the new MoU while also underlining opportunities to broaden collaboration beyond the health sector.
Among the notable prior initiatives is MakSPH’s joint work with UBOS and UNICEF, supported by EU funding, on the first comprehensive Food Security and Nutrition Assessment in ten districts of Northern Uganda and the West Nile region (2019). The findings of this work informed targeted nutrition programs and strategies to combat malnutrition among vulnerable populations, shaping policy directions at local and national levels.
In 2023, MakSPH, in collaboration with the National Planning Authority (NPA) and UNICEF, along with FHI360 and the Ministry of Health, produced an updated Situation Analysis of Newborn Health in Uganda. The document has guided the ministry’s national strategy development, including costed investments to improve newborn health across the country.
Professor Rhoda Wanyenze, Dean of MakSPH, hailed the partnership as a continuation of a long-standing relationship, noting that UNICEF’s support was instrumental in establishing the Makerere University Centre of Excellence for Maternal Newborn & Child Health (MNCH) in 2013.
“It’s such a delight, a great honor to finally get to this event where we can formalize our partnership with UNICEF. The partnership between UNICEF and Makerere has been a long-standing one, and we have worked together for decades, which has driven critical research and informed national policies,” she said. She emphasized that both institutions share a passion for tackling adolescent health challenges, particularly early pregnancies and marriages, which remain persistent barriers to progress.
The MoU extends collaboration beyond the School of Public Health. The Vice Chancellor noted productive partnerships across other departments, including the Department of Journalism and Communication and the College of Humanities and Social Sciences, emphasizing how diverse disciplines can contribute to evidence-based policy and community well-being.
Another important example is the Caring for the Caregiver (CFC) intervention led by the Makerere Institute of Teacher Education and Research (MITER) in the College of Education and External Studies (CEES). This was implemented in partnership with the Ministry of Health, UNICEF Uganda, and international partners. The evaluation examined caregiver emotional wellbeing, social support, and parenting stress in rural Uganda, contributing to the growing evidence base for nurturing care in resource-constrained settings.
Also, the School of Statistics and Planning in the College of Business and Management Sciences (CoBAMS) has partnered with UNICEF to tackle urgent socio-economic and public health challenges. A key example is the Socio-economic Impact Assessment of the 2022 Ebola Virus Disease outbreak in Mubende and Kassanda districts, which examined household-level shocks, community coping strategies, and the wider disruption of livelihoods. The study’s findings have informed national policy dialogue and action planning, emphasizing that there must be stronger preparedness measures.
According to the Vice Chancellor, the university’s broader engagement with UNICEF as a driver of research, innovation, and community outreach benefits children and families throughout Uganda.
For Dr. Nandy the partnership will support student involvement in real-world operational and programmatic work, creating pipelines for young scholars to contribute to child welfare initiatives.
Both parties expressed a shared vision of translating research findings into concrete actions that strengthen child protection and opportunities for learning and development. The collaboration is expected to yield new efforts for effective interventions, sharpen the policy dialogue, and catalyze scalable innovations that improve the daily lives of Uganda’s children.
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