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
At a ceremony held on 30th May 2025, themed ‘They taught us without saying a word’, the Makerere University College of Health Sciences (MakCHS) commemorated the silent teacher which are the cadavers (bodies) used in anatomy classes for medical students. In addition to a commemoration service, the event was used to create awareness and sensitise the public about the the importance of whole body donation.
The chief guest at the commemoration was Professor Mukadasi Buyinza, Deputy Vice Chancellor – Academic Affairs representing the Vice Chancellor, Professor Barnabas Nawangwe. The event attended by MakCHS students, staff and alumni was organised by students under Anatomy Society of MakCHS supported by Department of Anatomy and MakCHS leadership.
Welcoming guests to the event, Waziwu Mordecai–final year student of medicine and surgery who serves as President of the Anatomy Society, MakCHS explained that the reason for the gathering is three-pronged: to commemorate the silent teachers who make a profound contribution to medical education; to instill knowledge, compassion, and professionalism in future healthcare providers; and call on the community to support this noble act through awareness, advocacy, or future donation. ‘May the memory of our silent teachers live on in every life we will one day save’, he said.
The Anatomy society was founded in 2013 with aim of students providing peer mentorship to fellow students in lower years, such mentorship sessions help students appreciate better the anatomy of the human body. The society has supported:enhanced learning and mentorship; promoted academic participation including internal and external quizzes; and fostered connections including strengthen relationships between students across classes and with alumni.
Professor Elisa Mwaka, Head – Department of Human Anatomy welcomed all present for attending the ceremony. He thanked the College management led by the Principal, Professor Bruce Kirenga for the support provided in organizing the ceremony. He also expressed utmost appreciation to the Vice Chancellor for attending despite the competing priorities requiring his attention.
Professor Mwaka highlighted that we are here today, to pay our respect to the individuals whose bodies have been used for medical examination and research at MakCHS through offering prayers as well as sensitize people about willful/consented whole body donation.
Professor Mwaka explained that globally, sources of whole bodies for medical education and research are got through willed whole-body donation, unclaimed bodies in hospitals, imported bodies, executed persons among other means. In Uganda, unclaimed bodies in hospitals are used for medical as determined by the Uganda National Rules in the Penal Code Act of 1957.
In 2012 International Federation of Anatomy Associations (IFAA) recommended voluntary donation as the desirable and the only acceptable source for acquiring bodies. Almost all Africa countries and some European countries lack national body donation programs.
Speaking at the event, Professor Bruce Kirenga, Principal – MakCHS thanked Professor Mwaka for the insightful presentation. He welcomed Professor Buyinza to MakCHS and for accepting to attend despite the late invitation. He recognized the presence of the staff present and support towards the college activities.
Professor Kirenga underlined the importance of biomedical science under which human anatomy falls in medical education. ‘Biomedical sciences play a key role, once someone in grounded in the area, then he will be a good doctor’, he said.
The Principal also stressed that during his term of office operation efficiency will remain key ingredient for service delivery as well as rebuilding and rehabilitation of teaching and learning facilities. ‘Works to make the Biochemistry laboratory a model lab has commenced with a contract awarded to service provider; the refurbishment will be in phases’.
Professor Buyinza Mukadasi thanked the College, Human Anatomy department and the students for organizing the commemoration. ‘The amount of joy I have this morning, we should have done this a long time ago’, he said.
He expressed happiness at this commemoration for the silent teachers who unknowingly give so much to medical education and therefore mankind. He advised that community engagement to create awareness about the need for whole-body donation, regulatory compliance, and alignment to best practices.
He noted that disciplines like medicine is more like charity because medical practitioners give so much of themselves. ‘The number of people attending this ceremony is show of love for the discipline and commitment to the calling’ he said.
Professor Buyinza reiterated the commitment of Makerere University management to support MakCHS endeavours including this culture of commemorating the silent teacher. ‘Well-trained and season doctors are a result of the process explained here and the absence of bodies affects the quality of education provided and therefore the doctors produced’, he added.
Candles for the cadavers were lit and services representative of Anglican, Catholics and Muslims were conducted to remember the souls of the departed and wish them a peaceful rest. Ordinand Cosmas Ddembe for Anglican, Father Valentine Amuneke for Catholic and Dr. Haruna Kiryowa for Muslim preached the importance of respect for the dead and sacrifices of the dead for advancement of research and education in the medical field and health services.
Giving closing remarks, Professor Mwaka noted that setting up whole-body donation programs in Africa requires a holistic approach involving education, cultural sensitivity, legal structures, and partnerships with medical institutions.
Reasons why Africa has failed to establish body donation programs:
- Low awareness and willingness to donate bodies.
- Cultural and traditional beliefs
- Religious beliefs
- Fear of mishanding bodies
- Lack of legislation/ ambiguous regulations
- Lack of institutional policies and standard operating procedures
- Institutions should be encouraged to hold Services of thanksgiving or commemoration for those who have donated their bodies for medical education and research.
The following is required to change the current status:
- Cultural sensitivity and awareness
- Community engagement and awareness creation
- Educational campaigns
- Developing legal and ethical frameworks
- Building partnerships between hospitals and medical institutions
- Establishing local body donation systems i.e.,
- donation registration process,
- consent documentation,
- Logistical infrastructure necessary for the
- donation process.
- Effective communication, public trust,transparency.
- Training and professional development of healthcare providers.
- Global collaboration and funding: to share knowledge, best practices, and resources.
- Government support
- Funding and incentives
- Inclusion of body donation in national health strategies.
In a decisive step toward ending HIV as a public health threat by 2030, Uganda on Thursday, May 29, 2025, officially launched the third Uganda Population-based HIV Impact Assessment (UPHIA 2025) survey, a nationally representative household study expected to provide updated measurements on the status of the HIV epidemic by the end of the year.
The effort is led by Uganda’s Ministry of Health (MoH), with technical assistance from Makerere University School of Public Health (MakSPH), Uganda Bureau of Statistics (UBOS), Uganda Virus Research Institute (UVRI), and the U.S. Centers for Disease Control and Prevention (U.S. CDC), funded by the U.S. government through PEPFAR.
The Population-based HIV Impact Assessment (PHIA) surveys were first launched in 2014 as a global initiative at the International Center for AIDS Care and Treatment Programs (ICAP), based at Columbia University’s Mailman School of Public Health. Supported by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), through the U.S. CDC, the surveys have been conducted in at least 15 high-burden countries globally, including Uganda.
Led by national Ministries of Health, the PHIA surveys provide robust, population-level data on HIV prevalence, incidence, and viral suppression, offering a clear picture of epidemic trends and the effectiveness of national responses. They are designed to track progress, identify persistent gaps, and inform strategies to reach epidemic control, in line with global targets, including the fast-approaching goal of ending AIDS as a public health threat by 2030.
In Uganda, this survey was first rolled out between August 2016 and March 2017. The second followed in February 2020 but was disrupted by the COVID-19 outbreak, continuing through to March 2021. Both rounds were supported by ICAP at Columbia University, which provided technical assistance to strengthen data collection systems, improve laboratory infrastructure, and build national capacity to design, implement, and analyse the two national HIV surveys.
What sets UPHIA 2025 apart is the shift in technical leadership to Ugandan institutions for this third survey, reflecting local capacity to lead rigorous, high-quality public health research. For UPHIA 2025, Makerere University School of Public Health, in partnership with the Uganda Bureau of Statistics and the Uganda Virus Research Institute, is providing technical leadership to the Ministry of Health, alongside U.S. CDC. Implementation began with initial recruitment and training of over 300 field teams that begun on May 19, 2025, ahead of their nationwide deployment for data collection starting this June.
The first survey (UPHIA 2016) was an important milestone in informing Uganda’s national HIV response. This survey, concluded in 2017, measured, among things, the viral load suppression at the population level and provided household-based HIV testing and counselling, with results returned to participants and those who tested positive referred to care. The survey also assessed HIV incidence, HIV and syphilis prevalence, as well as hepatitis B infection rates. These findings would offer nationally representative data to track Uganda’s progress in controlling the HIV epidemic at both national and regional levels.
The next survey, UPHIA 2020, building on past success, was again executed with technical leadership from Columbia University’s ICAP, working with Uganda’s Ministry of Health alongside UVRI, UBOS, regional referral hospitals, local governments, and the U.S. CDC. It offered useful insights that showed encouraging progress, indicating that up to 88% of people living with HIV in Uganda at the time knew their status, 98% of them were on treatment, and 90% had achieved viral suppression. These results reflected momentum toward the UNAIDS global 95-95-95 targets, ensuring that most people living with HIV are diagnosed, treated, and have the virus under control, and advancing the broader goal of ending the epidemic by 2030.
Since the release of these findings nearly five years ago, which helped shape national HIV programming in Uganda, the country has made notable progress, but challenges remain. The UPHIA 2020 findings reported major gaps in testing coverage, particularly among young people and men. The results were also instrumental in identifying service delivery shortfalls and guiding decisions on resource allocation, program design, and policy. Yet today, Uganda remains one of the most heavily burdened countries in the world, with over 1.5 million people living with HIV and over 50,000 preventable new infections recorded per year.
It is this trend that Uganda’s Ministry of Health is working urgently to reverse. Launching UPHIA 2025 at the Ministry’s headquarters in Kampala on May 29, 2025, amidst great hope and expectation among the participants, Uganda’s Minister of Health, Dr. Jane Ruth Aceng Ocero, noted that the long-anticipated and previously delayed survey had arrived at such a critical moment. She welcomed UPHIA 2025 as both a measure of the country’s resilience and a guide for the final stretch toward ending AIDS by 2030, now just a few years away.
“The UPHIA 2025 survey comes at a strategic time to help us recalibrate and refocus our efforts,” the Health Minister said, underscoring the importance of its outcomes. “This will be Uganda’s final population-based HIV survey before 2030, the target year for ending AIDS as a public health threat. The findings will serve as a baseline for tracking our progress toward this national and global goal. They will also guide the next phase of strategic planning, ensuring that the final push toward 2030 is grounded in robust and reliable data.”
This third round of the survey will be carried out in 6,685 randomly selected households across the country. The exercise will involve interviews with approximately 15,000 individuals aged at least 15 and selected through a national household listing by UBOS. Of those, around 14,980 are expected to provide blood samples for HIV testing and analysis of viral suppression and other health indicators. The survey will also include interviews with 1,300 children and adolescents aged 10 to 14, though no blood draws will be taken from this group. Participation is voluntary, free of charge, and requires consent from the head of each household.
Dr. Aceng explained that beyond providing updated estimates of HIV prevalence, incidence, and viral load suppression, and examining regional and demographic disparities, the survey, which will cover the rest of the year, will include a qualitative post-survey assessment component to gather insights from people living with HIV, particularly those not virally suppressed, to understand their challenges and strengthen support services. Also, for the first time, this survey will assess the burden of non-communicable diseases among people living with HIV and include focused interviews with adolescents aged 10 to 14 in Mid-North and Mid-Eastern Uganda, where viral suppression was reported to be lowest in UPHIA 2020.
These activities are made possible thanks to the development support from the U.S. government, which invested $10 million (about UGX 37 billion) for this survey. Speaking at the UPHIA 2025 launch, U.S. Ambassador to Uganda William W. Popp noted that the United States has partnered with Uganda for over three decades to help people live longer, healthier lives;
“The bulk of our annual support, approximately $500 million this year, is dedicated to health programs, making the U.S. government the largest single provider of health assistance to Uganda,” the Ambassador said. He added, “Through PEPFAR, the United States has played a major role in Uganda’s progress toward ending HIV as a public health threat. Since 2003, when Uganda became one of the first countries to implement the program, we have invested nearly three billion dollars—almost 11 trillion Uganda shillings—in HIV prevention, care, and treatment services, saving millions of lives and making both our countries safer from HIV.”
With the benefit of hindsight, Uganda’s early encounter with HIV in the 1980s marked the beginning of one of the region’s most severe epidemics. But over the decades, a determined national response, driven by political leadership, community mobilisation, collaboration and global support, has delivered measurable progress. In the recent past, adult HIV prevalence fell from 7.2% in 2010 to 5.1% in 2023. Among women, it declined from 8.5% to 6.6%, and among men from 5.8% to 3.6%. AIDS-related deaths dropped from 53,000 to 20,000 over the same period, with female mortality declining by 66% and child deaths by 77%.
All these gains, amidst the challenge, go to show what is possible with sustained commitment. What is more, throughout this long journey of Uganda’s battle with eradicating HIV, Makerere University School of Public Health has played a pivotal role. From the early work of Prof. David Serwadda, whose ground-breaking research during the initial detection of HIV helped shape Uganda’s early response, to last year’s 2024 landmark Purpose 1 study on the twice-yearly injectable Lenacapavir that proved 100% efficacy in preventing HIV infection, MakSPH has remained at the forefront of innovation, evidence generation, and policy influence.
That legacy continues today, with the School providing technical leadership to the Ministry of Health in the implementation of UPHIA 2025. At the launch, MakSPH Dean Prof. Rhoda Wanyenze expressed pride in the School’s role as a trusted partner in Uganda’s fight against HIV and other public health challenges. She noted that for over 70 years, during which the School has existed, MakSPH has helped shape the country’s public health landscape through rigorous research, training, and policy support, anchored by a strong, long-standing partnership with the Ministry of Health and partners.
She also noted that the collaboration between Makerere University and the U.S. CDC has helped build national capacity in surveillance and epidemiology, while also strengthening Uganda’s ability to lead high-quality, large-scale national surveys, asserting that:
“The partnership between Makerere University and CDC has not only helped build national capacity in surveillance and epidemiology, but has also strengthened our ability to lead high-quality, large-scale national surveys. After two decades of joint work, we are proud that UPHIA 2024–2025 is now a fully Ugandan-led effort. This is critical to the sustainability of the skills and knowledge generation to inform our local response.”
The survey builds on MakSPH’s experience conducting similar national studies, including those on tuberculosis, prison health, family planning, schistosomiasis, and non-communicable diseases such as the STEPS survey. It will leverage the School’s strong capacity in research and impact evaluation, both in Uganda and across the African region, with a firm commitment to delivering high-quality data guided by the same rigour and integrity that have defined our work over the years, Prof. Wanyenze affirmed.
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