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
Health
Makerere University Explores Strategic Partnership with Tsinghua University in Safety Science, Disaster Resilience and Public Health
Makerere University has taken a significant step toward strengthening global research collaboration following a high-level meeting between Vice Chancellor Prof. Barnabas Nawangwe and a delegation from Tsinghua University’s Hefei Institute for Public Safety Research, one of China’s leading centres of excellence in disaster prevention, public safety, and emergency management. The engagement marked a renewed commitment to advancing scientific cooperation between the two institutions, particularly in addressing complex environmental and public health challenges that continue to shape national and global development.
A Partnership Anchored in Shared Challenges and Global Priorities
In his remarks, Prof. Nawangwe emphasized that the concept of comprehensive public safety, spanning natural disasters, epidemics, infrastructure failures, and social risks, is increasingly relevant to all colleges and disciplines at Makerere. Uganda’s experience with epidemics such as Ebola, cholera, and COVID-19; frequent landslides in mountainous regions; flooding events; and rising traffic-related incidents place the University in a unique position to contribute applied research, community-based insights, and local knowledge to a global scientific dialogue.
He noted that the Tsinghua presentation revealed new areas of alignment, particularly in epidemic modelling, early-warning systems, and integrated emergency management, areas where Makerere’s public health scientists, medical researchers, and social scientists have extensive expertise.
“This collaboration offers meaningful opportunities for nearly every college at Makerere,” he noted. “Public safety touches the environment, public health, engineering, social sciences, ICT, humanities, and urban planning. The challenges we face as a country make this partnership both timely and essential.” Prof. Barnabas Nawangwe noted.
Tsinghua University: A Global Leader in Comprehensive Public Safety.
The delegation from Tsinghua University outlined China’s national investment in Public safety over the past two decades, an effort driven by the recognition that life and security are the foundation of sustainable development. Tsinghua’s Hefei Institute for Public Safety Research has developed nationally recognised research platforms and large-scale simulation facilities dedicated to Natural disaster modelling (earthquakes, landslides, floods, typhoons, Infrastructure and urban systems safety, Public health emergencies and epidemic preparedness, Early-warning, monitoring, and emergency communication, Traffic and transportation safety, Post-disaster reconstruction and resilience planning.
Their systems currently support over 100 provincial and municipal emergency management centres in China, underscoring their global leadership in practical, scalable solutions for disaster risk management. The delegation reaffirmed that Uganda’s lived experience with multiple hazards presents opportunities for meaningful knowledge exchange. They expressed particular interest in learning from Makerere’s work on epidemic response, community health systems, and the social dimensions of disaster management.
Emerging Areas of Partnership
The meeting identified several promising pathways for long-term collaboration:
1. Joint Research in Disaster Risk Reduction and Climate-Related Hazards
Both institutions expressed readiness to co-develop research projects on landslides, floods, urban resilience, and multi-hazard modelling, drawing on Tsinghua’s advanced simulation technologies and Makerere’s environmental expertise and geographic field realities.
2. Public Health Emergency Preparedness and Epidemic Response
Makerere’s renowned public health schools and research centres will collaborate with Tsinghua on epidemic prediction, early-warning systems, and integrated preparedness frameworks, leveraging Uganda’s decades of experience managing high-risk disease outbreaks.
3. Infrastructure and Urban Safety, Including Traffic Systems
With Uganda experiencing rapid urbanisation and high rates of motorcycle-related road incidents, Tsinghua shared insights from China’s own transformation, including infrastructure redesign, transport modelling, and public transit innovations. Collaborative work in this area would support city planning and road safety interventions in Kampala and other urban centres.
4. Academic Exchange and Capacity Building
Both sides expressed interest in student exchanges, staff mobility, co-supervision of postgraduate research, and specialised training programmes hosted at Tsinghua’s world-class safety research facilities.
5. Development of a Joint Public Safety Laboratory at Makerere
The institutions are exploring the establishment of a collaborative safety research platform in Uganda. This initiative could serve as a regional hub for innovation in emergency management, environmental safety, and technology-driven risk assessment.
Towards a Long-Term, Impactful Collaboration
The meeting concluded with a shared commitment to develop a structured partnership framework in the coming months, supported by both universities and aligned with Uganda–China cooperation priorities. Both teams acknowledged that the partnership must yield tangible results that enhance community resilience, bolster national preparedness systems, and foster scientific capacity for future generations.
Prof. Nawangwe commended Tsinghua University for its willingness to co-invest in research and capacity building, noting that such collaborations position Makerere not only as a leading research institution in Africa but as an active contributor to global scientific progress.
“This partnership has the potential to transform our understanding of the science of public safety to deliver solutions that safeguard lives.” Prof. Barnabas Nawangwe noted.
“It aligns perfectly with Makerere’s mission to be a research-led, innovation-driven university responding to the world’s most urgent challenges.” He added.
As part of this strategic partnership engagement, Makerere University will, on Wednesday, 17th December, co-host the Makerere University–Tsinghua University Symposium on Public Safety and Natural Disaster Management. The symposium will run from 8:00 AM to 2:00 PM in the University Main Hall, Main Building.
This symposium represents a deepening of collaboration not only between Makerere University and Tsinghua University, but also a broader strategic partnership between Uganda and the People’s Republic of China.
During the event, H.E. Zhang Lizhong, Ambassador of the People’s Republic of China to Uganda, together with the State Minister for Higher Education, Government of Uganda, will officially launch the China–Uganda Belt and Road Joint Laboratory on Natural Disaster Monitoring and Early Warning. The Laboratory will be hosted at Makerere University, positioning the University to play a central role in strengthening Uganda’s and the region’s capacity for natural disaster preparedness, public safety, and emergency management research.
Caroline Kainomugisha is the Communications Officer, Advancement Office, Makerere University.
Makerere University on 11th November 2025 marked a significant milestone as the Health User Committee (Mak-HUC)—established by the Vice Chancellor in 2022 as part of his strategic mandate to strengthen and oversee the University’s health service delivery—formally handed over its three-year report. The event highlighted the committee’s achievements in guiding, monitoring, and improving Makerere University Health Services, presenting a record of progress that has reshaped confidence, strengthened systems, and expanded care for staff and students.
A Call for Integrated and Sustainable Health Services
The Vice Chancellor Prof. Barnabas Nawangwe emphasized the need for a more integrated, efficient, and sustainable approach to delivering health services for Makerere University staff and students. He noted that while the University does not receive supplies from the National Medical Stores system, its community remains entitled to quality care, urging renewed consideration of how essential services—such as drug access, surgical limits, and special medical cases—can be better supported. He highlighted the importance of practical costing models, especially for extending care to staff dependents, and called for flexibility in managing exceptional cases like complex surgeries or referrals abroad.
The Vice Chancellor also underscored the urgent need to modernize the University Hospital, proposing that Makerere begin incrementally establishing a teaching hospital using existing facilities and leveraging expertise of highly qualified consultants the College of Health Sciences (CHS). He reiterated that government budget ceilings remain a major constraint, but encouraged the committee to develop a concept that could be presented to Council and later supported through strategic engagement with the Ministry of Finance, Planning and Economic Development. Throughout his remarks, he applauded the Mak-HUC for its work and reaffirmed that even with the creation of a professional hospital board, the committee must remain central in representing service users.
Aligning Health Services with Sustainable Insurance Models
Prof. Bruce Kirenga the Principal College of Health Sciences responded by clarifying the committee’s efforts to align Makerere’s health services with real insurance models, including cost projections for covering additional family members and encouraging voluntary staff contributions where necessary. He acknowledged the complexity of expanding service coverage—especially in cases of chronic illness or high-cost procedures—but emphasized the committee’s commitment to cautious, sustainable planning. He confirmed that the College is working closely with the Hospital to improve services, attract specialists, and integrate students into the health system, a model that naturally draws academic staff into clinical roles without imposing unrealistic obligations.
Prof. Kirenga also noted the College’s ongoing assessments of facility needs, including dialysis, ICU expansion, and equipment placement, stressing that the ultimate goal is a unified, well-structured health network across the University. He welcomed the Vice Chancellor’s support for transforming existing facilities into a teaching hospital and pledged to refine proposals that reflect both current realities and long-term institutional needs.
Committee Chair Reflects on Three-Year Achievements
Dr. Allen Kabagyenyi, Chair of Mak-HUC, reflected on the three-year journey with gratitude and pride, noting that the committee not only fulfilled its terms of reference but exceeded expectations. She highlighted major gains made under the Vice Chancellor’s support, including transforming the University Hospital into a self-accounting unit—an intervention that unlocked smoother financial management and accelerated service delivery. Dr. Kabagyenyi commended the strong collaboration with the Hospital administration, Human Resources Directorate, and other units, which ensured staffing stability even during institutional transitions.
She pointed to the expansion of referral partnerships—now totaling 29 health facilities nationwide—as a crucial achievement that guarantees continuity of care for staff and students wherever they are. She also emphasized the committee’s work in guiding policies for specialized treatment and cross-border care, strengthening fraud-prevention systems, and advancing digital transformation through an integrated health information system and the new Makerere University Health Services (MakHS) website. Dr. Kabagyenyi noted that these improvements have directly benefited staff and enhanced the overall quality of care, supported by close collaboration with the College of Health Sciences and access to some of the country’s best consultants. She concluded by underscoring the ongoing need for a comprehensive University Health Policy and expressed deep appreciation to the Vice Chancellor and University Management for their unwavering openness and support—attributes she credited for the committee’s success.
Highlights of Service Growth and Infrastructure Upgrades
The Chief, Makerere University Health Services, Prof. Josaphat Byamugisha, highlighted the significant progress achieved under the Health User Committee’s oversight, noting especially the steady rise in service utilization and renewed confidence among staff and students. He emphasized that trust in the University Hospital has grown organically—built not through advertising, but through improved patient experience, stronger systems, and word of mouth.
Prof. Byamugisha pointed to major achievements such as expanded Out-Patient Department (OPD) attendance, better student access to care, enhanced infrastructure including modernized theatres capable of complex procedures, and upgraded laboratories supported through framework agreements that ensure continuous equipment renewal. He noted that specialized clinics, increased inpatient capacity, and expanded referral networks have strengthened the Hospital’s reach and responsiveness. The Hospital is also taking on more research work and clinical training, partnering with units such as optometry, internal medicine, and the Clinical Trials Unit, with new collaborations—like the MasterCard Foundation—driving further growth.
He reaffirmed that the long-term vision of establishing a fully-fledged Makerere University Teaching Hospital is taking shape through coordinated efforts with the College of Health Sciences. Prof. Byamugisha credited the Vice Chancellor’s support for enabling these strides and expressed deep appreciation to all stakeholders contributing to the continued improvement of health services for the entire University community.
DICTS Unveils Modular Information System & Health Services Website
The Directorate for ICT Support (DICTS) presented the newly developed Makerere University Integrated Health Management Information System (MakIHMIS), designed around a modular system that streamlines all hospital processes. The platform integrates eight functional modules, including registration, triage, clinician workflows, inventory and medicines management, pharmacy dispensing, laboratory information management, user management, and linkages to both the Academic and Human Resource Management Information Systems ACMIS and e-HRMS respetively. Most of these modules are already active, enabling smooth patient registration, accurate record-keeping, real-time inventory tracking, and seamless access to student and staff data without duplication. Only two modules—land and insurance—remain under development before the system becomes fully end-to-end. The MakHS website on the other hand features information about hospital services, events, research activities, and staff profiles, offering both the university community and the public a centralized and efficient digital gateway to the hospital’s operations.
The term of the outgoing committee has officially concluded, and preparations are now underway for the incoming committee to assume its duties and continue advancing the work ahead.
Health
Proceedings of the National Annual Communicable and Non-Communicable Diseases and 19th Joint Scientific Health Conference 2025
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