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
A Voice for Excellence, Equity and African Sovereignty
When Dr. Michael Makanga walked onto the stage at the 8th Galien Forum Africa in Dakar on 31 October 2025 to receive the Special Career Achievement Galien Prize, presented by President Bassirou Diomaye Faye under the theme Health sovereignty: an imperative for Africa, the moment carried weight beyond any medal or citation. “It is a celebration of a lifelong commitment,” he said, “but also a reminder of a responsibility I have never been willing to compromise: to inspire others to raise their voices for excellence, science, and equity.”
For more than two decades, Dr. Makanga has been a quiet architect of Africa’s health sovereignty. His work has unfolded far from cameras: in laboratories constrained by resources, in policy rooms where African priorities demanded a stronger voice, and in mentoring sessions with young scientists seeking reassurance that their ideas mattered.
Born and trained in Uganda, Dr. Makanga earned a Bachelor of Medicine and Surgery from Makerere University before pursuing a master’s degree and PhD at the Liverpool School of Tropical Medicine. His career spans nearly 30 years, encompassing tropical medicine, clinical trials in Africa and Europe, and senior international management roles. Since joining EDCTP in 2004, he has guided its growth as a unique Africa–Europe partnership, strengthening African capacity for high-quality, ethical clinical research while accelerating solutions for poverty-related diseases. Today, he leads the Global Health EDCTP3 Joint Undertaking under the EU’s Horizon Europe programme.
President Faye captured the essence of Dr. Makanga’s achievement: “Scientific excellence is not negotiable; it is earned. It underpins our credibility and our sovereignty.” For Dr. Makanga, the statement is a call to action. “I hope this recognition reminds us that Africa’s scientists and innovators can lead global health research with excellence and purpose. We owe it to the next generation to build the systems and confidence that make this possible,” he said.
Dr. Makanga’s peers describe him as a “builder”: someone who strengthens research systems, mentors emerging scientists, and fosters equitable partnerships long before “local ownership” became a policy buzzword. In his own words, the award honors his “career’s contribution to advancing Africa’s health sovereignty” while reinforcing his commitment to ensure younger scientists do not have to fight for legitimacy as previous generations did.
The 2025 Prix Galien Africa celebrated Dr. Makanga alongside innovators reshaping African science. La Ruche Health, a Côte d’Ivoire-based digital health platform, won for connecting users to certified providers through an AI-powered system. Senegalese computer scientist Adji Bousso Dieng received a special prize for applying artificial intelligence to the natural sciences, including spotting emerging viral variants using her “Vendi Score” tool. The awards were organised with the support of the Presidency of Senegal, the Gates Foundation, the West African Health Organization, and the Rockefeller Foundation, with a jury co-chaired by Dr. John Nkengasong and Professor Souleymane Mboup.
Yet the award’s true weight lies not in ceremony, but in its symbolism. Dr. Makanga’s career exemplifies how African scientists can lead, shape policy, and influence global health priorities when empowered and supported.
Makerere University colleagues attest to this impact. Dr. Victoria Nankabirwa, a clinical researcher and epidemiologist, reflects: “EDCTP support allowed me to build multidisciplinary teams, enhance laboratory and trial infrastructure, and generate evidence relevant for policy and practice. It strengthened my scientific independence and expanded the long-term sustainability of my research, particularly on childhood vaccines.”
She adds, “Dr. Makanga’s vision and commitment have strengthened institutions, built capacity, and fostered equitable partnerships, enabling African investigators to lead complex studies that address the continent’s priorities. His recognition shows what is possible when scientists are empowered, trusted, and supported.”
Dr. Alex Kayongo, an immunologist at Makerere University, describes EDCTP support as “catalytic,” enabling advanced training and a platform to study microbiome–immune interactions in HIV-associated COPD. His work is shaping mechanistic insights and strengthening Uganda’s capacity for complex respiratory immunology research. “Global health funding is increasingly competitive, making EDCTP’s role even more vital,” he says. “Africa needs sustainable support for complex, lab-intensive research. Continued investment in infrastructure, leadership, and fair partnerships is essential if African institutions are to drive innovation and secure true scientific sovereignty.”
Dr. David Musoke, an associate professor of disease control, credits his EDCTP fellowship with deepening his malaria research and advancing his career. His studies combined housing improvements, environmental management, and behavioural measures to complement traditional malaria prevention, shaping practical, community-informed interventions. “Dr. Makanga’s contribution to African science has been tremendous, and his continued stewardship gives us confidence that evidence generated on the continent will increasingly shape policy and practice,” he observes.
Dr. Makanga’s impact is visible not only in individual careers but across institutions and nations. Through EDCTP, he has championed African-led trials, strengthened laboratory capacity, and fostered cross-country collaboration. Colleagues emphasize that his leadership has created a generation of African scientists who are confident, collaborative, and globally competitive.
“My experience with EDCTP-funded programmes has shown the transformative impact of African-led research,” Dr. Nankabirwa reflects. “Dr. Makanga’s vision and commitment have strengthened institutions, built capacity, and fostered equitable partnerships, enabling African investigators to lead complex studies that address the continent’s priorities. His recognition shows what is possible when scientists are empowered, trusted, and supported, inspiring the next generation of research leaders.”
Dr. Makanga’s recognition is a tribute to perseverance, vision, and mentorship: a scientist who kept going when resources were scarce, a leader who refused partnerships that treated Africans as subjects, and a mentor who reminded young researchers that they belong at the centre of global science.
As he stood among Africa’s leading innovators in Dakar, the message was unmistakable: Africa can lead, Africa must lead, and it will lead, through science, excellence, and equity.
Makerere University is proud to celebrate Dr. Michael Makanga, one of its distinguished alumni, on receiving the Special Career Achievement Prize of the Prix Galien Africa 2025. This honor recognises his exceptional leadership in medical research and his role in advancing African-led science. Through his work, Dr. Makanga continues to strengthen institutions, mentor emerging researchers, and amplify Africa’s voice on the global health stage.
Kalangala, an idyllic archipelago often romanticised for its sunsets, today witnessed a historic leap in healthcare. Makerere University Vice Chancellor, Prof. Barnabas Nawangwe, launched the Infectious Diseases Institute (IDI) Kalangala Clinical Research Centre—the island’s first modern research facility.
“This is more than a building; it’s a lifeline,” said Prof. Nawangwe. “IDI is not only Uganda’s leading health partner, managing over 20% of HIV cases, but research is first on its agenda. If people are not healthy, they can’t work—it’s useless to invest in anything else.”
Kalangala ranks third in HIV prevalence nationwide at 13.1%, with fishing communities hardest hit. Until now, residents endured perilous boat rides to the mainland for advanced care. “Accessing healthcare has always meant a journey across waves—long, costly, and sometimes dangerous,” said District Chairperson Jajab Ssemakula. “You have not only invested in Kalangala; you have brought Makerere University to Kalangala.”
Supported by the Gates Foundation, the centre is part of a multinational HIV prevention study conducted across 31 sites in Kenya, South Africa, and Uganda. Its first mission: testing whether a monthly pill can protect adolescent girls and young women from HIV—a breakthrough that could transform vulnerable communities.
“This centre means access without barriers,” said Dr. Andrew Kambugu, IDI Executive Director. “Kalangala residents no longer need to travel long distances for clinical trials or advanced care.”
Prof. Samuel Luboga, IDI Board Chairperson, reassured residents of IDI’s long-term commitment:
“We are not a fleeting partner. This sentinel research centre aligns with our vision of freeing Africa from the burden of infectious diseases. The assurance I give Kalangala is—we are here to stay.”
Henry Ssebunya, Deputy Resident District Commissioner, praised IDI’s innovation and consistency:
“IDI has treated and cared for people living with HIV, deployed medical drones to deliver life-saving medicines, and now built a research centre. This is a new chapter for Kalangala.”
From a sleeping sickness camp in 1906 to a cutting-edge research hub in 2025, Kalangala’s story is one of resilience, innovation, and hope.
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