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Genetics & Genomics Research Dissemination; Makerere Bioethicists Emphasize the Importance of Community Engagement

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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.

The Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki sharing findings and recommendations from the study.
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.
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.
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.
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.

 Research team:

  • Associate Prof. Erisa Mwaka
  • Dr. Ian Munabi
  • Assoc. Prof. Joseph Ochieng
  • Dr. Janet Nakigudde
  • Prof. Nelson Sewankambo

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Sickle Cell Disease Stakeholders’ Engagement calls for raising awareness at grassroots

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Dr. Rosemary Byanyima (Centre) with Prof. Sarah Kiguli (3rd Left) and other stakeholders at the engagement meeting on 24th October 2025. Makerere University, through the College of Health Sciences (CHS), hosted the Sickle Cell Disease Stakeholders’ Engagement Meeting organized by the Center of Excellence for Sickle Cell Disease and Neglected Tropical Diseases, in partnership with Enhancing Research Capacity for Sickle Cell Disease and Related Non-Communicable Diseases Across the Lifespan in Uganda (ENRICH) and the Sickle Pan Africa Research Consortium (SPARCo), 24th October 2025, MakSPH Auditorium, Kampala Uganda, East Africa.

Makerere University, through the College of Health Sciences (CHS), hosted the Sickle Cell Disease Stakeholders’ Engagement Meeting on 24th October 2025. The event was organized by the Center of Excellence for Sickle Cell Disease and Neglected Tropical Diseases, in partnership with Enhancing Research Capacity for Sickle Cell Disease and Related Non-Communicable Diseases Across the Lifespan in Uganda (ENRICH) and the Sickle Pan Africa Research Consortium (SPARCo). The meeting brought together a diverse group of stakeholders, including religious leaders from the Catholic Medical Bureau, Protestant Medical Bureau, and the Uganda Muslim Supreme Council, as well as members of academia and public health practitioners.

During the Stakeholders’ Engagement Meeting held under the theme; Addressing Sickle Cell Disease in Schools and Communities, panelists emphasized the importance of early detection and effective communication in managing the disease. One of the speakers highlighted the critical role of medical interns as the first point of contact in identifying symptoms such as unexplained anemia and limb swelling, urging them to take detailed patient histories for timely diagnosis and referral. Another panelist, Ms. Penina Agaba, a lecturer at the Makerere University, underscored the need to translate data-driven research into simple, accessible formats for policymakers and community leaders. She noted that findings should be communicated in local languages through channels such as workshops, radio programs, and community meetings to ensure wider understanding and practical policy action.

Dr. Rosemary Byanyima. Makerere University, through the College of Health Sciences (CHS), hosted the Sickle Cell Disease Stakeholders’ Engagement Meeting organized by the Center of Excellence for Sickle Cell Disease and Neglected Tropical Diseases, in partnership with Enhancing Research Capacity for Sickle Cell Disease and Related Non-Communicable Diseases Across the Lifespan in Uganda (ENRICH) and the Sickle Pan Africa Research Consortium (SPARCo), 24th October 2025, MakSPH Auditorium, Kampala Uganda, East Africa.
Dr. Rosemary Byanyima.

In her remarks, Dr. Rosemary Byanyima, the Executive Director of Mulago National Specialised Hospital, shared her personal and professional commitment to improving the management of sickle cell disease in Uganda. A sickle cell warrior herself, Dr. Byanyima revealed that Mulago is planning to establish a medical campus that will offer specialized care, including hip replacements for patients suffering from sickle cell disease. She also noted that the hospital has supported the establishment of several service centers in Mukono General Hospital, Pallisa District, and Kayunga, aimed at bringing services closer to the communities. Dr. Byanyima urged all stakeholders to work together to raise awareness, increase testing, and encourage early healthcare seeking among those affected by the disease.

The panel discussions at the Sickle Cell Disease Stakeholders’ Engagement Meeting underscored the shared responsibility of all sectors in creating a more inclusive and informed society for people living with the condition. The conversations, moderated by Dr. Deo Munube and Ms. Evelyn Mwesigwa, explored how schools, faith institutions, and communities can work together to support those affected. Speakers emphasized the need for inclusive school policies that accommodate children with sickle cell disease—such as allowing extra clothing, flexible restroom access, and special exam arrangements—alongside guidance and counseling services to combat stigma and nurture self-esteem. They also stressed the importance of honesty from parents in disclosing their children’s health conditions to enable appropriate care.

Panelists pose for a group photo after their session. Makerere University, through the College of Health Sciences (CHS), hosted the Sickle Cell Disease Stakeholders’ Engagement Meeting organized by the Center of Excellence for Sickle Cell Disease and Neglected Tropical Diseases, in partnership with Enhancing Research Capacity for Sickle Cell Disease and Related Non-Communicable Diseases Across the Lifespan in Uganda (ENRICH) and the Sickle Pan Africa Research Consortium (SPARCo), 24th October 2025, MakSPH Auditorium, Kampala Uganda, East Africa.
Panelists pose for a group photo after their session.

From a broader perspective, panelists like Mr. Kajiiko Shafik from the Uganda Muslim Supreme Council highlighted the potential of faith-based structures to advance community sensitization and advocacy. The discussions collectively called for greater collaboration between the Ministries of Education and Health, improved psychosocial support, and stronger legal and policy frameworks to ensure that every child and adult living with sickle cell disease can thrive in a compassionate and supportive environment.

Panelists included members from UMSC and other agencies. Makerere University, through the College of Health Sciences (CHS), hosted the Sickle Cell Disease Stakeholders’ Engagement Meeting organized by the Center of Excellence for Sickle Cell Disease and Neglected Tropical Diseases, in partnership with Enhancing Research Capacity for Sickle Cell Disease and Related Non-Communicable Diseases Across the Lifespan in Uganda (ENRICH) and the Sickle Pan Africa Research Consortium (SPARCo), 24th October 2025, MakSPH Auditorium, Kampala Uganda, East Africa.
Panelists included members from UMSC and other agencies.

In her closing remarks, Dr. Sarah Kiguli, the Director of the Centre of Excellence for Sickle Cell Disease and Neglected Tropical Diseases at Makerere University, expressed gratitude to all stakeholders for their active participation and thoughtful contributions. She noted her optimism about the existing systems that can be leveraged to strengthen collaboration and awareness efforts, saying, “I’m happy that there are systems already in place that we can use to engage everyone on this cause.” Dr. Kiguli emphasized the importance of collective responsibility in the fight against sickle cell disease, adding, “It is impossible for us here in Makerere to reach everyone, but I love the message of ‘train the trainers’ so that sensitisation work can be efficient and far-reaching.”

Prof. Sarah Kiguli. Makerere University, through the College of Health Sciences (CHS), hosted the Sickle Cell Disease Stakeholders’ Engagement Meeting organized by the Center of Excellence for Sickle Cell Disease and Neglected Tropical Diseases, in partnership with Enhancing Research Capacity for Sickle Cell Disease and Related Non-Communicable Diseases Across the Lifespan in Uganda (ENRICH) and the Sickle Pan Africa Research Consortium (SPARCo), 24th October 2025, MakSPH Auditorium, Kampala Uganda, East Africa.
Prof. Sarah Kiguli.

Makerere University’s continued commitment to public health research extends beyond academia into real community impact. Through the College of Health Sciences, the University has strengthened partnerships with the Ministry of Health and regional hospitals to enhance early screening, diagnosis, and management of Sickle Cell Disease. Recent efforts include supporting the expansion of the national Sickle Cell Registry and developing community-based counselling programs to raise awareness at the grassroots level. Despite progress, Uganda still faces significant gaps in screening and treatment, with thousands of children born each year with the condition remaining undiagnosed. Makerere’s initiatives, therefore, aim to bridge these gaps through research, training, and collaboration with government, faith-based, and cultural institutions to ensure that no child or family faces Sickle Cell Disease in silence.

Eve Nakyanzi

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Makerere, Karolinska Reflect on 25 Years, Encourage University Research Equality

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Photo by Kseniya Hartvigsson.

STOCKHOLMMakerere University and Karolinska Institutet (KI-Mak) marked 25 years of collaboration on Oct. 15, 2025, with a hybrid forum on research equity, highlighting lessons for universities striving toward fair and sustainable global partnerships.

The event, part of the Global Conversations on Sustainable Health, explored the theme, “Exploring Power Dynamics & Equity in Partnerships.” Scholars, policymakers, and university leaders gathered to discuss how institutions can build collaborations grounded in trust, shared ownership, and mutual respect.

Organized by the Centre of Excellence for Sustainable Health (CESH), a joint initiative between Makerere University and Karolinska Institutet, the forum reflected on how equitable partnerships drive progress toward the 2030 Sustainable Development Goals.

Hours before the event, Sweden’s Ambassador to Uganda, H.E. Maria Håkansson, posted on X (formerly Twitter):

“The partnership between Makerere University and Karolinska Institutet is both dynamic and exemplary in how many years of development cooperation can lay the foundation for mutually beneficial relations between institutions in Sweden and Uganda.”

Front Row (L-R): Prof. Helena Lindgren, Dr. Phyllis Awor, Prof. Rhoda Wanyenze, Sweden’s Ambassador to Uganda, H.E. Maria Håkansson, Prof. Annika Östman Wernerson, president of Karolinska Institutet, and Prof. Peter Waiswa during their visit to Makerere University on Nov. 11, 2024. Photo by Davidson Ndyabahika
Front Row (L-R): Prof. Helena Lindgren, Dr. Phyllis Awor, Prof. Rhoda Wanyenze, Sweden’s Ambassador to Uganda, H.E. Maria Håkansson, Prof. Annika Östman Wernerson, president of Karolinska Institutet, and Prof. Peter Waiswa during their visit to Makerere University on Nov. 11, 2024. Photo by Davidson Ndyabahika

Equity, Trust, and Warmth at the Core

Panelists navigated questions of power, agency, and mutual respect. Policymakers, researchers, and academics agreed that successful partnerships depend not only on fairness but also on warmth, the human connection that sustains collaboration and ensures initiatives respond meaningfully to local realities.

Dr. Andreas Göthenberg, executive director of the Swedish Foundation for International Cooperation in Research and Higher Education (STINT), recalled that earlier models often reduced African researchers to “data farmers” in one-directional projects led from the North.

“We now support balanced research collaborations, not capacity building alone,” he said.

Over the past decade, he added, STINT has seen a surge of high-quality proposals from African researchers seeking genuine collaboration.

“When partners bring different expertise and learn from each other, that is when collaborations work well,” he said. “Institutions with fewer resources can now do very advanced things; that’s a real game changer.”

Göthenberg said Africa’s rapid advances in microfinancing, cloud computing, and even space research show that “technology development means institutions with fewer resources can still do very advanced things,” offering lessons for innovation systems in Europe.

Dr. Andreas Göthenberg, executive director of the Swedish Foundation for International Cooperation in Research and Higher Education (STINT), speaking during the Global Conversations on Sustainable Health, in Stockholm. Photo by Kseniya Hartvigsson. Pics failing to upload on Mak News with errors of "resources"
Dr. Andreas Göthenberg, executive director of the Swedish Foundation for International Cooperation in Research and Higher Education (STINT), speaking during the Global Conversations on Sustainable Health, in Stockholm. Photo by Kseniya Hartvigsson

Why Equitable Partnerships Matter

Professors Rhoda Wanyenze and Stefan Swartling Peterson have argued that traditional models often concentrate leadership and funding in the Global North, thereby limiting the agency of Southern partners.

Their work from long-term collaborations in Ethiopia, Uganda, Lao PDR, and Vietnam shows that shifting leadership to where research occurs strengthens local capacity and aligns agendas with community needs.

They demonstrate that equity relies on mutual trust, transparency, and shared decision-making, principles that transform funding into a tool for empowerment rather than dependency. Joint PhD programs, reciprocal staff exchanges, and twinned supervision models have further enabled two-way knowledge flow and reduced brain drain.

“Partnerships grounded in reciprocity, inclusion, and respect are not only ethically sound but also more effective,” Wanyenze said. “They build local ownership, lasting capacity, and context-driven innovation.”

Front Row: Prof. Annika Östman Wernerson, president of Karolinska Institutet (L) and Makerere Vice Chancellor Prof. Barnabas Nawangwe (R) with officials during the hybrid forum. Makerere University and Karolinska Institutet (KI-Mak) marked 25 years of collaboration on Oct. 15, 2025, with a hybrid forum on research equity, highlighting lessons for universities striving toward fair and sustainable global partnerships. The event, part of the Global Conversations on Sustainable Health, explored the theme, “Exploring Power Dynamics & Equity in Partnerships.”
Front Row: Prof. Annika Östman Wernerson, president of Karolinska Institutet (L) and Makerere Vice Chancellor Prof. Barnabas Nawangwe (R) with officials during the hybrid forum.

Championing South-to-South Knowledge Exchange

Associate Professor Caroline Wamala-Larsson, director of the SPIDER program at Stockholm University, underscored that the Global South must set its research agendas.

“The agenda must be set by Southern institutions. Swedish institutions act as collaborators, not directors,” she said.

She cited projects in Uganda, Tanzania, Rwanda, Bolivia, and Mozambique where South-to-South learning has flourished.

Associate Professor Caroline Wamala-Larsson, director of the SPIDER program at Stockholm University, presents at the Global Panel on Equitable Partnerships. Photo by Kseniya Hartvigsson. Makerere University and Karolinska Institutet (KI-Mak) marked 25 years of collaboration on Oct. 15, 2025, with a hybrid forum on research equity, highlighting lessons for universities striving toward fair and sustainable global partnerships. The event, part of the Global Conversations on Sustainable Health, explored the theme, “Exploring Power Dynamics & Equity in Partnerships.”
Associate Professor Caroline Wamala-Larsson, director of the SPIDER program at Stockholm University, presents at the Global Panel on Equitable Partnerships. Photo by Kseniya Hartvigsson

“Bolivians traveled to Tanzania to share source codes from a research management system. Now, the University of Dar es Salaam wants to adopt it,” she said. “Solutions developed within the South often fit local contexts better than Northern models.”

Wamala-Larsson added that innovation and digital transformation have strengthened institutional systems. “We need new funders, private sector partners, and universities to participate equally.” Respect for each partner’s contribution is essential for sustainability,” she said.

Adapting to a Changing Global Landscape

Shifting global priorities and limited funding are reshaping how universities collaborate. Ms. Brenda Wagaba, partnerships officer at Makerere University, noted that while funding remains limited, the Government of Uganda, for instance, has taken steps to support local research through the Research and Innovation Fund. “The government started setting aside money for university research even before the recent cuts,” she said.

“Now, with those cuts, the need for sustained domestic investment is even greater.” She added that such initiatives strengthen the confidence of Southern partners to engage as equal contributors in global collaborations.

Dr. Rawlance Ndejjo, a Makerere University researcher, said local initiatives could help sustain momentum. “Local funding opportunities allow countries to find resources for research and partnerships. Such efforts can improve equity through bottom-up collaborations,” he said.

Dr. Rawlance Ndejjo, a Lecturer and Lecturer at Makerere University, receives a souvenir from Prof. Annika Östman Wernerson, president of Karolinska Institutet. Photo by Kseniya Hartvigsson. Makerere University and Karolinska Institutet (KI-Mak) marked 25 years of collaboration on Oct. 15, 2025, with a hybrid forum on research equity, highlighting lessons for universities striving toward fair and sustainable global partnerships. The event, part of the Global Conversations on Sustainable Health, explored the theme, “Exploring Power Dynamics & Equity in Partnerships.”
Dr. Rawlance Ndejjo, a Lecturer and Lecturer at Makerere University, receives a souvenir from Prof. Annika Östman Wernerson, president of Karolinska Institutet. Photo by Kseniya Hartvigsson

Göthenberg noted that new opportunities lie in multidisciplinary work. “Many of the challenges we face today demand broadly defined solutions,” he said. “Multidisciplinary projects lead to broader societal impact and stronger partnerships.”

He also pointed to Africa’s demographic advantage: “With its young population and rapid innovation, Africa is driving technological development in ways that can benefit both continents.”

Equitable Partnerships Deliver Results

Wagaba said engaging communities early is key to success. “When we engage communities early, we can bridge the gap between large-scale interventions and local acceptance. Whether it’s water, vaccines, or health infrastructure, success depends on understanding immediate community priorities,” she said.

She cautioned that top-down projects often fail to deliver lasting impact.

“You may build a vaccine plant or develop a vaccine, but if a community’s immediate need is safe water, your intervention will falter,” she said, adding that warmth, respect, and open communication are as critical as technical expertise.

Makerere Vice Chancellor Prof. Barnabas Nawangwe highlighted tangible results from Sweden’s long-term support.

Makerere Vice Chancellor Prof. Barnabas Nawangwe presenting during one of the engagements with the KI team to commemorate 25 years of partnership in Stockholm. Photo by Kseniya Hartvigsson. Makerere University and Karolinska Institutet (KI-Mak) marked 25 years of collaboration on Oct. 15, 2025, with a hybrid forum on research equity, highlighting lessons for universities striving toward fair and sustainable global partnerships. The event, part of the Global Conversations on Sustainable Health, explored the theme, “Exploring Power Dynamics & Equity in Partnerships.”
Makerere Vice Chancellor Prof. Barnabas Nawangwe presenting during one of the engagements with the KI team to commemorate 25 years of partnership in Stockholm. Photo by Kseniya Hartvigsson

“Under the SIDA program, 500 PhD students were trained, all of whom returned to Uganda,” he said. “The program made them feel at home while gaining knowledge abroad. Without mutual respect, equity will always face challenges.”

Prof. Annika Östman Wernerson, president of Karolinska Institutet, said sustainable partnerships depend on continuous engagement.

“Every collaboration begins with people meeting. Warmth and curiosity are crucial between individuals and institutions,” she said. “Equity is not static; it requires continuous work. Trust and transparency are critical.”

MakSPH Partnership Officer Ms. Brenda Wagaba Mugarura receives a souvenir from Prof. Annika Östman Wernerson, president of Karolinska Institutet, in Stockholm, Sweden. Photo by Kseniya Hartvigsson. Makerere University and Karolinska Institutet (KI-Mak) marked 25 years of collaboration on Oct. 15, 2025, with a hybrid forum on research equity, highlighting lessons for universities striving toward fair and sustainable global partnerships. The event, part of the Global Conversations on Sustainable Health, explored the theme, “Exploring Power Dynamics & Equity in Partnerships.”
MakSPH Partnership Officer Ms. Brenda Wagaba Mugarura receives a souvenir from Prof. Annika Östman Wernerson, president of Karolinska Institutet, in Stockholm, Sweden. Photo by Kseniya Hartvigsson.

A Global Model for Sustainable Partnerships

The 25-year collaboration between Makerere University and Karolinska Institutet demonstrates how long-term, equitable partnerships can strengthen research systems and inform policy.

As Nawangwe put it:

“Students return home, communities benefit, and research informs global health policy. This is a model of how equity and trust drive sustainable partnerships.”

Makerere University and Karolinska Institutet teams celebrate after Vice Chancellor Barnabas Nawangwe and President Annika Östman Wernerson signed the renewed MoU, extending the partnership to 2030. Photo by Kseniya Hartvigsson. Makerere University and Karolinska Institutet (KI-Mak) marked 25 years of collaboration on Oct. 15, 2025, with a hybrid forum on research equity, highlighting lessons for universities striving toward fair and sustainable global partnerships. The event, part of the Global Conversations on Sustainable Health, explored the theme, “Exploring Power Dynamics & Equity in Partnerships.”
Makerere University and Karolinska Institutet teams celebrate after Vice Chancellor Barnabas Nawangwe and President Annika Östman Wernerson signed the renewed MoU, extending the partnership to 2030. Photo by Kseniya Hartvigsson

The Makerere–Karolinska (KI-Mak) partnership shows how universities, funders, and governments can work together fairly and Like many others working in this field, the Center recognises that there is still much to learn and discuss about how partnerships can continue to evolve through openness, dialogue, and shared reflection.

As Makerere and Karolinska look to 2030, their renewed agreements promise more than ceremonial goodwill. The two universities will intensify exchanges between students and faculty, expand joint research, share academic output, and organise lectures, conferences, and workshops. They will also open new paths for training, scientific collaboration, and shared learning. After 25 years, the partnership has proven that long-term cooperation can endure and excel with mutual respect, steady investment, and a clear purpose.

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Davidson Ndyabahika

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TWAS recognises Dr. Angelina Mwesige Kakooza for her research

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Dr. Angelina Mwesige Kakooza, Associate Professor of Paediatrics in the Department of Paediatrics and Child Health receives her award.

Dr. Angelina Mwesige Kakooza, Associate Professor of Paediatrics in the Department of Paediatrics and Child Health, School of Medicine, Makerere University College of Health Sciences (MakCHS) received the 2025 TWAS-Fayzah M. Al-Kharafi Award in Medical Sciences. She was recognised for her research on neurodevelopmental disorders – particularly epilepsy, cerebral palsy, and nodding syndrome – and for advancing policy and research, mentorship, as well as local community interventions to enhance children’s health.

The award was given at the recent 17th General Conference of The World Academy of Sciences (TWAS) held in Rio de Janeiro, Brazil under the theme ‘Building a Sustainable Future: The Role of Science, Technology, and Innovation for Global Development.’ Organized in partnership with the Brazilian Academy of Sciences (BAS) and TWAS, the conference brought together leading scientists, policymakers, and institutional leaders from across the global South and beyond.

In her remarks after receiving the award, Dr. Kakooza said, “This award highlights the importance of neurodevelopmental disorders which are a great health problem worldwide, often diagnosed late and treated poorly,” said Kakooza. “It affirms my contribution to science in Africa, strengthens advocacy for gender equity in science and education and makes me a role model for others, increasing my influence in the scientific community.”

Associate Professor Angelina Mwesige Kakooza.
Associate Professor Angelina Mwesige Kakooza.

Dr. Angelina Kakooza Mwesige is a Ugandan scholar with over 25years teaching experience whose research focuses on neurodevelopmental disorders in children centred on their epidemiology, early screening, identification and community based interventions in Uganda. Her current areas of research cover studies on early detection and interventions for young infants at high risk of neurodevelopmental delay and disability in Nepal and Uganda; development of community engagement projects to empower adolescents living with epilepsy in Uganda reduce stigma in their communities; as well as development and testing of an interactive epilepsy smart phone application to improve resilience among them.

TWAS is a global merit-based science academy based in Trieste, Italy, and administered as a UNESCO Programme Unit. Read more here: https://twas.org/

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