Part of the genetics and genomics study team and participants at the research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.
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.
The Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki sharing findings and recommendations from the study.
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.
Dr. Moses Ochan at the event.
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
Some of the participants during the dissemination.
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.
Prof. Nelson Sewankambo at the dissemination. He appreciated the quality of genetics and genomics study led by Prof. Mwaka Erisa.
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.
The 92nd Guild Ministry of Health is set to host the Annual Makerere Guild Medical Camp, a three-day outreach that will bring free and essential medical services to students, staff, and the surrounding community. The camp will run from 17th to 19th September 2026, from 8:00am to 5:00pm each day, at the Freedom Square.
Themed around promoting student wellness for academic excellence, the medical camp is organised under the leadership of Hon. Wamezaya Ebenezer, the Minister of Health in the 92nd Guild Government, in alliance with several partner organisations supporting the university’s health and wellness agenda. The initiative reflects a growing recognition within student leadership circles that academic performance is closely tied to the physical and mental wellbeing of the university community.
Comprehensive Range of Services
The medical camp will offer a wide range of services designed to address both routine and specialised health needs. On the general health side, attendees will have access to general and specialist medical consultations, allowing students, staff, and community members to seek professional advice on a variety of health concerns without the usual costs associated with private or even public healthcare.
A female medical personnel attends to a male client.
Screening services will also be a central feature of the camp. Organisers have confirmed that sickle cell testing, malaria rapid diagnostic testing, and HIV screening will be available on site, giving participants the opportunity to know their status and receive guidance on appropriate next steps. Eye care services and laboratory diagnostics will round up this category, addressing common but often neglected areas of student health.
Beyond diagnostics and consultations, the camp will provide free essential medicines to those who need them, easing the financial burden that often accompanies treatment even after a diagnosis has been made. Reproductive health counseling will also be offered, giving students a confidential space to discuss matters that are frequently overlooked in general campus health conversations. Mental health counseling completes the list of available services, an inclusion that speaks to the increasing attention being paid to psychological wellbeing within the university community.
A Camp Open to the Wider Community
While the camp is organised by the Guild Ministry of Health and centred on student welfare, its reach extends beyond the student body. Organisers have made it clear that the free medical services will be available to students, staff, and members of the whole Makerere community, positioning the event as a broader public health contribution rather than a strictly internal university affair. This inclusive approach mirrors similar outreach efforts previously undertaken by student leadership and university departments, which have sought to position Makerere University not just as a centre of learning but as an active contributor to community welfare in the areas surrounding its campuses.
A male client gets his BMI checked.
Freedom Square, long regarded as the symbolic heart of student activity and expression at Makerere University, was selected as the venue for the three day event. Its central location and historic significance make it an accessible and fitting site for an initiative of this scale, expected to draw considerable numbers of participants over the course of the camp.
Health as a Pillar of Academic Success
The organisers have anchored the medical camp around the message of promoting student wellness for academic excellence, a theme that underscores the connection between health and academic performance. University life often places significant demands on students, both physically and mentally, and untreated health concerns can quietly undermine academic progress long before they become visible crises. By bringing screening, treatment, and counseling services directly to students at no cost, the Guild Ministry of Health is addressing barriers that might otherwise prevent students from seeking care, whether due to cost, distance, or stigma, particularly around mental health and reproductive health matters.
The 91st Guild Minister of Health, Hon. Bbosa Sharif (L) poses by the event banner in the Freedom Square.
The inclusion of mental health counseling alongside more traditional physical health services is particularly notable. It signals an evolving understanding among student leaders that wellness cannot be addressed through physical checkups alone, and that psychological support deserves equal standing within campus health initiatives. Similarly, the presence of reproductive health counseling reflects an effort to normalise conversations that many young people find difficult to initiate on their own.
What to Expect
Over the three days, participants can expect a structured environment at Freedom Square, with separate service points catering to the different categories of care on offer. Medical professionals will be on hand to conduct consultations and screenings, while counselors will provide guidance on reproductive and mental health matters in a setting designed to protect privacy and encourage openness.
Given the scale of services on offer and the open invitation extended to staff and community members in addition to students, organisers anticipate strong turnout throughout the three day period. Those interested in attending are encouraged to plan their visits within the stated hours of 8:00am to 5:00pm to take full advantage of the services available.
H.E. Bbosa Sharif receives female students at the Medical Camp.
For any inquiries regarding the medical camp, members of the university community and the public have been directed to reach out to Hon. Wamezaya Ebenezer, the Minister of Health, through the contact provided by the Guild Ministry of Health.
Building on a Guild Tradition
The Annual Makerere Guild Medical Camp is not a new concept within student governance at the university. Successive Guild Ministries of Health have used the medical camp as a recurring platform through which they translate campaign promises around student welfare into visible action. Each edition tends to build on the lessons of the one before it, with organisers typically expanding the range of services offered as new partnerships are secured and as feedback from previous camps is incorporated into planning.
Sickle Cell Screening (Left Tent) was one of the services offered.
This year’s edition, organised under the 92nd Guild Ministry of Health, appears to place particular emphasis on breadth of service, combining preventive screening, curative consultation, and psychosocial support within a single three-day window. The decision to bundle sickle cell testing, malaria and HIV screening alongside eye care and laboratory diagnostics suggests an intention to make the camp a one stop point for health assessment, reducing the need for participants to seek out multiple providers across the city for basic checks they might otherwise postpone indefinitely.
Why Timing Matters
The scheduling of the camp in September places it at a point in the academic calendar when many students are settling back into campus life after recess, a period during which health concerns accumulated over the break, whether physical ailments left unattended or emerging mental health pressures tied to academic anxiety, tend to surface. Offering free consultations and counseling at this juncture allow students to address these concerns early, before they compound into more serious complications that could interfere with coursework, examinations, or general campus participation.
A female medical personnel attends to a female client.
For staff members and residents of the areas surrounding the university, the timing also offers a convenient opportunity to access services that might otherwise require travel to distant health facilities or extended waiting periods within an already strained public health system. In this sense, the camp functions as a modest but meaningful supplement to existing healthcare provision in the vicinity of the university.
As the 17th of September approaches, the Annual Makerere Guild Medical Camp stands as another example of the Guild Ministry of Health stepping beyond the boundaries of policy and advocacy into direct, hands-on service delivery, a model that continues to shape the character of guild ministries at Makerere University. Students, staff, and members of the surrounding community are encouraged to take advantage of the free services on offer and to look out for further communication from the Guild Ministry of Health as the event draws closer.
For more info, reach Hon. Wamezaya on +256784541248
Makerere University School of Public Health, in collaboration with Jhpiego, invites applications for 49 short-term positions under the Scaling the Optimal Use of Multiple ACTs to Prevent Antimalarial Drug Resistance (STOP-AMDR) Project.
The short-term assignments will support data collection in Buikwe and Busia districts, with some national-level activities. Applicants are encouraged to review the requirements for their preferred position before applying.
Makerere University School of Public Health (MakSPH), through the Africa-Europe Cluster of Research Excellence (CoRE) for Preparedness and Response to Pandemics and Shocks, has shared findings from its study of Uganda’s Mpox response with stakeholders in Kasese, Amuru, Nakasongola and Mayuge districts to strengthen district preparedness for future outbreaks.
The Africa-Europe CoRE is a partnership co-led by MakSPH and the Centre for Research on the Epidemiology of Disasters at UCLouvain, Belgium. It brings together universities in Africa and Europe to strengthen research, training and preparedness for pandemics and other public health shocks.
The district-level dissemination meetings, held from 10 to 14 August 2026, brought together more than 100 local government, health and security officials, Village Health Teams, implementing partners and community representatives. The meetings enabled stakeholders to validate the district-level findings, identify practical actions and provide feedback for the study’s final analysis and national dissemination.
Mr. Philliam Jabim shares the Mpox response study findings with participants during the dissemination meeting in Nakasongola District on 12 August 2026.
Uganda confirmed its first two Mpox cases on 24 July 2024 at Bwera Hospital in Kasese District. The Ministry of Health declared an outbreak on 2 August 2024. As documented in the study, the response involved health workers, communities, local governments, security agencies, political leaders, and implementing partners.
In response to the outbreak, a MakSPH research team led by Prof. Rhoda Wanyenze, Dr. Rawlance Ndejjo, Dr. Steven Kabwama and Mr. Douglas Bulafu conducted a study in May 2025 to assess Uganda’s Mpox response, including its policies, interventions, strategies and challenges, and generate lessons to inform recovery and strengthen preparedness for future public health emergencies.
Using purposive sampling, the research team conducted 20 key informant interviews and five focus group discussions in each of the four districts, drawing perspectives from western Uganda in Kasese, northern Uganda in Amuru, central Uganda in Nakasongola and eastern Uganda in Mayuge.
Participants and the MakSPH research team at the Mpox response study dissemination meeting in Nakasongola District on 12 August 2026.
The study, titled Assessment of the Mpox Response in Uganda: Documenting Challenges, Lessons and Innovations to Strengthen Emergency Preparedness and Response Capacities, was funded by the Government of Uganda through the Makerere UniversityResearch and Innovation Fund (Mak-RIF).
“This study is helping us move beyond recounting the Mpox response to identifying the actions that districts and national partners can take before the next outbreak. By validating the findings with stakeholders who led and experienced the response, we are ensuring that the evidence reflects local realities and can inform stronger surveillance, risk communication, coordination and community engagement,” said Mr. Bulafu, who led the MakSPH team during the dissemination meeting in Amuru.
Mr. Douglas Bulafu engages participants during the Mpox response study dissemination meeting in Amuru District on 10 August 2026.
In Amuru, the 10 August meeting brought together over 25 stakeholders from the district health team, political leadership, security agencies, Village Health Teams, implementing partners and the community. On the same day, a second MakSPH team, led by Mr. Keneth Sebukeera and Mr. Filimin Niyongabo, convened stakeholders in Kasese for a parallel validation meeting. The consultations then continued in Nakasongola on 12 August and concluded in Mayuge on 14 August, extending the study’s engagement across all four districts.
Across the districts, stakeholders said the results reflected their experience during the outbreak. They pointed to strengths in leadership, coordination, community engagement and partner support, while also describing gaps in documentation, logistics, diagnostic access, staffing, risk communication, public trust and continuity of essential health services.
They also noted inconsistent implementation of the World Health Organization (WHO) 7-1-7 target, which calls for detecting a suspected outbreak within seven days, notifying public health authorities within one day and completing early response actions within seven days.
The MakSPH research team, led by Mr. Keneth Sebukeera and Mr. Filimin Niyongabo, with participants during the Mpox response study dissemination meeting in Kasese District on 10 August 2026.
In Kasese, stakeholders highlighted gaps in documentation, financial and logistical resources, and human resources. They identified Village Health Teams and grassroots, religious and cultural leaders as important resources for community surveillance and risk communication. They called for stronger collaboration between technical and non-technical leaders, engagement with traditional healers, greater use of local radio for public sensitisation, and better facilitation of district epidemic response teams to reach distant communities.
Amuru participants called for proactive preparedness in the border district, citing misinformation and rumours as barriers to risk communication. They urged timely, accurate information from health workers and other authorities; training in disease surveillance and grant writing to strengthen capacity and resource mobilisation; and compassionate care, psychosocial support and community awareness to reduce stigma and support survivor reintegration.
During the meeting in Nakasongola, stakeholders identified Community Health Workers and Community Health Extension Workers as potential resources for strengthening community surveillance and addressing workforce shortages. Given the district’s position around Lake Kyoga and along the Kampala-South Sudan transit corridor, they also called for stronger documentation, note-taking and reporting, accurate real-time information, closer communication with the Ministry of Health, and collaboration among technical, political, religious and community leaders.
Ms. Eunice Vivian Asingo, Senior Nursing Officer at Nakasongola Health Centre IV, contributes to the discussion during the Mpox response study dissemination meeting in Nakasongola District on 12 August 2026.
Ms. Eunice Vivian Asingo, Senior Nursing Officer at Nakasongola Health Centre IV, called for a permanent, adequately resourced outbreak-management centre to help protect routine services during future epidemics. “We appeal for better facilities to manage epidemics and outbreaks. At Nakasongola Health Centre IV, spaces previously used for outbreak management have been repurposed for other services, and we have limited staff. During the Mpox response, colleagues assigned to manage patients later returned to the general team, creating fear among staff already under pressure,” she said.
In Mayuge, Dr. Basembeza highlighted leadership, coordination and surveillance structures operating from district to community level as important factors in the response. He said the structures enabled the district to receive and respond quickly to community alerts. “Whenever there is a rumour or an alert, we are able to respond. Within 20 minutes, we had a response because of the structure we have,” Dr. Basembeza said.
Based on the findings, the research team recommends increased preparedness financing, stronger community engagement, decentralised diagnostic services through stronger district laboratory capacity, and improved health information and research systems.
Across the four districts, stakeholders reaffirmed that trusted community structures and coordinated action across sectors are essential to strengthening outbreak preparedness.
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