Health
Genetics & Genomics Research Dissemination; Makerere Bioethicists Emphasize the Importance of Community Engagement
By Joseph Odoi
As Genetics research continues growing in Uganda, Bioethicists from Makerere University College of Health Sciences have stressed the importance of community engagement, genetic counselling and Public sensitization when conducting Genetics research in Uganda.
These recommendations were made at a research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.
While presenting findings of the ELSI-UG project titled “Ethical and social issues in informed consentprocesses in African genomic research”, the Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki from College of Health Sciences, Makerere University in a special way welcomed participants to the dissemination. He noted that involving communities in genetics and genomics research is very important when it comes to enhancing the understanding of genetics and genomic information by the general public.
‘’There has been an exponential increase in genetics and genomic research in the last two decades.
However, this field of research is complex and is poorly understood by various research stakeholders. One way of enhancing understanding of genetics and genomic information by the general public is through community engagement. It is therefore crucial that communities are meaningfully involved in research processes right from conception. Community engagement provides a two-way communication channel through which researchers gain better understanding of community priorities, preferences, traditions, practices, and cultural sensitivities.’’ explained Prof. Mwaka.
He equally highlighted the need for translation of scientific language into local languages, genetic counsellors and consent in Genetics research adding that community engagement is crucial in building equitable research collaborations and trust between researchers and research communities.
Genetic and Genomics
According to National Institute of General Medical Sciences, Genetics is the scientific study of genes and how certain qualities, conditions or traits are passed from parents to their off springs. Genomics on the other hand involves using information about genes to: identify genetic disorders including future diseases so that doctors tailor treatment for individuals.
In same spirit, Dr. Moses Ochan, the Vice Chairperson of the Makerere University Research and Ethics Committee stressed the importance of sensitization of communities and researchers before any study is undertaken. According to him, sensitization enables communities understand the advantages and disadvantages of participating in a study thus making informed decisions.
In this United States National Institutes of Health funded study that sought to explore the knowledge,perceptions and experiences of stakeholders; researchers, bioethicists, REC members, research participants and caregivers/guardians on the informed consent process, and the ethical, legal and social implication of genomic research, 243 protocols were analyzed involving both local and international researchers
Findings
Return of individual genetic results to research participants
- Of 122 parents/caregivers of adolescents in the study, 77.1 % expressed the desire to receive all results of their children’s genetic/genomic results.
- 71.3 % of parents/caregivers agreed that children should be able to take part in research testing for genetic conditions that begin during childhood, even if there is no treatment that can alter the course of the condition
- 85.3 % of parents/ caregivers expressed the desire to know genetic research results about children to see if they are more likely to get a disease in the future.
- 71.3 % of parents/ caregivers agreed that Children should be able to take part in research testing for genetic conditions for which there is a treatment that begins during childhood that can alter the course of the condition
- 62.3 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that start in adulthood and have no treatment that can alter the course
- 89.4 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that will arise in their adult years, only if there is treatment or prevention that should begin in childhood
On the most important issues parents should consider in deciding whether or not to get genetic research results, 81.2% cited distress knowing that there are potential problems for other family members. Additionally, 45.0 % of parents and caregivers noted that receiving their child’s genetic results might worry their family; and 27.8% worried about stigma and discrimination
To address this, 69.2 % of parents and care givers said genetic counselling should be offered prior to a sample being taken to do genetic research
On perceptions on returning individual results of genomic research, parents and caregivers indicated that It is the researchers’ moral obligation to return clinically significant results; as such, genetic results should be communicated to them by the study doctor. Most parents preferred being informed first before involving the children; and some mothers expressed the desire to exclude the child’s father from these discussions until they (mothers) have understood the implications of the results in question.
On the role of children in making decision makings on whether to regarding return of genetic results or not, there was no consensus on the ideal age for disclosure of results. Some parents and caregivers pointed out that involvement of children in these discussions should depend on child’s character, level of understanding and ability to cope with the implications..
On handling findings that have familial implications, there were mixed feelings about involving other family members. Parents, especially mothers expressed fear of attribution. They thus suggested that the biological parents of the child should be the first ones to receive these results and then decide whether to involve other family members.
On the perceived challenges to return of results, parents and caregivers cited protracted delays in communicating genetics/genomics results; difficulty in tracing the child’s family, especially when the parents die and they are being cared for by other caregivers; risks of knowing unpleasant findings and paternity disputes.
Parents and caregivers offered several suggestions for the safe return of results of paediatric genomic research and these included the need to organize peer support and sensitization activities for adolescents participating in genetic studies; feedback of results should be done by a multidisciplinary team comprising of clinicians, genetic counsellors, the child and parents. All concurred that other family members should be involved at a later stage.
Informed consent and sharing of biological samples in collaborative genomic research and biobanking
On consent to future use of samples, 88.8% of the 187 researchers that participated in the study indicated that there is need to provide donors with the option to consent. 62% indicated that informed consent forms should include multiple options regarding the types and conditions of future research for which the samples may be used (tiered consent). 6.2% said that participants should only consent for the current study, and any future studies on the stored samples would require re-consent. However, the majority of researchers felt that the need to reconsent places an unacceptable burden on the researchers (62%) and is prohibitively costly (59.4%)
On informed consent experiences and practices, it was found that most principal investigators (12/15) were not well conversant with the informed consent procedures of their respective studies because they delegate this to study coordinators and nurses/nurse counsellors. Most nurses/nurse counsellors lacked basic knowledge and understanding of genetics, including the risks of genetic research.
On Information disclosure, researchers noted that genetic research is complex and oftentimes research participants do not adequately understand the information disclosed them during the consenting process. They thus recommended the use of an iterative approach that encourages consultation with family and/or people research participants trust, use of simple language, use of visual aids and other media, and objective assessment of comprehension. The also reiterated the need for translating informed consent documents into local languages and the use of peer educators. Researchers emphasized the role of community engagement in community education and sensitization, ensuring that researchers respect local cultural values and beliefs, and dispelling of superstitions and misinformation.
- The perceived challenges to the informed consent process included, the poor quality and inaccuracy of translations of ICF into local languages, inadequate understanding of informed consent, limited understanding of genetics by communities and some research team members, lack of professional genetic counselling services in Uganda, and mistrust of foreign collaborators.
On Export of human biological materials (HBM), researchers had a positive attitude towards the export of samples and expressed a desire for collaborative partnerships in genetics/genomic research and bio banking that are characterized by mutual respect and equity. However, they raised several concerns:
- They seem not to be well conversant with the guidance provided by the national ethics guidelines on bio banking and
- They all concurred that material transfer agreements (MTA) are key in the transfer of human biological materials across the national borders. However, they surmised that these MTA are unfair and tend to favour international Collaborators. They felt that local researchers and research institutions are not empowered enough to bargain favorably during MTA negotiations. They also indicated that the national ethics guidelines are vague on role of RECs in MTA and data sharing agreement development. Furthermore, they indicated that Uganda lacks appropriate enabling ethical and legal frameworks to protect the interests of local scientists and research institutions
- On sharing of the benefits of research, the researchers felt the ground was not leveled and there was neither equity nor fairness in sharing of GBR benefits in international collaborative research. They attributed this to the lack of scientific integrity and questionable research practices by collaborating researchers, lack of effective communication between collaborating partners, denial of access to shared data and samples by Northern collaborators, and felt that the oversight function of UNCST during MTA implementation is limited.
To address the issues at hand around genetics and genomics research, they made the following recommendations;
Recommendations to enhance comprehension of informed consent for genetic/genomic research and biobanking
- Escalating community engagement: to sensitize the general public and educate them on genetics research and its implications
- Iterative approach to informed consent where participants are given ample time to read/be read to consent information, ask questions, make consultations with family and trusted persons
- Encouraging the use of simple language and various media during information disclosure.
- There is need for harmonization of translations. A dictionary of translated key scientific and medical terms/concepts in research and clinical care in local languages should be developed
- Develop specific national guidelines for genetic and genomic research in Uganda.
- Research ethics committees should be trained in the basics of genetic research in order to ensure that they appreciate the ELSI and are competent enough to review genetic research.
- The use of checklists for assessing understanding of consent should become mandatory and should also be included in the national ethics guidelines.
- All stakeholders should read and understand the available national and international guidelines, policies, and regulations pertaining to genetics/genomic research and bio banking before negotiating Material transfer agreements.
- Research ethics committees should be empowered to review and monitor the execution of MTAs during research implementation, and this should be clearly stipulated in the national ethics guidelines.
- The national research regulators and individual institutions should join forces and devise mechanisms for tracking and monitoring the use of exported HBM and data.
- Encouraging meaningful involvement of communities in Material transfer agreements negotiations, particularly regarding sharing of the benefits of research.
- There should be capacity building for clinical genetics, particularly clinical geneticists and professional genetic counsellors
- Community engagement activities should be scaled up to prepare communities for the return of genetic research results as and when they are available
More about the Project
This project explored the knowledge, perceptions and experiences of stakeholders on the informed consent process, and the ethical, legal and social implication of genomic research. The goal of the project was to contribute to a better understanding of the ethical legal and societal issues associated with genomic research in low resource settings. The study employed both quantitative and qualitative methods of data collection and analysis. Prospective evaluation was done using questionnaire surveys; focus group discussions; in-depth interviews; direct observation of informed consent processes; and assessment of the quality of informed consent
This study was funded by United States National Institutes of Health through The Human Heredity and
Health in Africa (H3Africa) initiative which is spearheading bio banking and genomics research in Africa for Africa.
The study was conducted between November 2018 to 2022 by a team of researchers led by Associate Prof. Erisa Mwaka as Principal Investigator.
Research team:
- Associate Prof. Erisa Mwaka
- Dr. Ian Munabi
- Assoc. Prof. Joseph Ochieng
- Dr. Janet Nakigudde
- Prof. Nelson Sewankambo
Health
Ministry of Health Launches National University Health Screening Initiative at Makerere 92nd Guild Medical Camp
Despite a morning downpour, the two-day 92nd Makerere University Guild Annual Medical Camp successfully commenced on September 17, 2026 with a launch at the Freedom Square.
The Launch marks a strategic partnership between the Ministry of Health and higher education institutions to advance physical well-being and awareness of students from public and private universities.
Presiding over the event, the Minister of State for Health (General Duties), Hon. Anifa Kawooya Bangirana, launched the intensified testing and active case finding for Malaria, HIV/AIDS and Sickle Cell Disease.
Ministry officials emphasized that laboratory screening and diagnostic testing are critical entry points for early detection, linkage to care, appropriate clinical management, surveillance and prevention, and the Ministry of Health pledges full support to strengthen these services across universities nationwide.
Held under stewardship of the Makerere University Dean of Students office, the camp offered a comprehensive suite of health services to the student body and the wider community. Attendees had access to the following services:
- General and Specialist Consultations
- Sickle Cell, Malaria RDT and HIV Screening
- Eye Care and Laboratory Diagnostics
- Free Essential Medicines
- Reproductive Health Counseling
- Mental Health Counseling
While addressing the attendees, Hon. Kawooya emphasised that health is synonymous with national economic productivity.
She guided the youth to prioritise well-being, and avoid living in denial for it is the first step to refusing help. This will help build a firm foundation for any future contributions to national development.
The Minister further warned students against risky behaviours, including substance abuse and sexual immorality, which she described as poisonous.
She advocated for responsible reproductive health practices, urging students to utilise resources available to protect themselves for the future.
Why you should Know Your Status
Prof. Charles Olaro, who is the Director General of Health Services at the Ministry of Health, Uganda reflected on his time at the university during the peak of the HIV epidemic, recalling a visit from the late Bongole Lutaya.
He noted that today’s youth have not witnessed the severity of the AIDS due to the availability of care and ARVs, which can create a false sense of security.
“People are in care and you have not seen the real slim disease. You have not seen it”
He added that some attending are products of mothers that undertook prevention of mother-to-child transmission of HIV, and they gave birth to negative children. But now when we are grown up, they are reckless with their sexual life.
Prof Olaro summarized his remarks by noting that health is an irreplaceable asset and that decisions made today have significant future ramifications. They urge the audience to take the opportunity to know their status, whether for HIV or sickle cell disease, as this is the essential entry point for care and life planning.
Benefits of knowing your status:
- It serves as the entry point for receiving necessary care.
- It allows for better life planning.
- It enables individuals to manage other aspects of their lives effectively.
- It prevents future health complications.
Genetic Awareness and Blood Donation
Associate Professor Richard Idro the Deputy Principal of the Makerere University College of Health Sciences (MakCHS) emphasised the importance of seeking appropriate information with a focus on genetic awareness. He advised the students to know their status before marriage to prevent passing on genetic conditions.
“One day when you fall in love, you know that preferably you should not marry somebody who is also carrying a certain gene.”
He then delved into the importance of treating HIV and clearing malaria parasites, which he addressed exhaustively.
From this, Dr Idro’s focus turned to blood donation where he acknowledged a number of people that had already participated in the exercise at the Uganda Red Cross Society tent.
“I see the Red Cross at one corner. As we passed there, 36 people had donated blood. Although, gentlemen, I saw very few of you donate blood.”
He concluded by challenging the young men present and reminding them that they can donate blood up to four times a year and still remain healthy.
Empowering Ambassadors of Global Health Awareness
The Ministry of Health called upon the students attending the camp to serve as ambassadors for global health awareness in their respective institutions.
The Executive Director/Commissioner National Health Laboratory and Diagnostic Services (NHLDS), Dr. Susan Nabadda Ndidde advised the students to make sure that they mobilise and intensify testing for all these diseases.
“We will work with you as a Ministry to provide the tests to make sure that we know your status and prevent these diseases in time.”
She wrapped up her message by thanking Makerere for allowing the Ministry of Health to partner on this cause and urged the students to embrace this opportunity and make sure they leave after establishing their status.
By bringing these critical services directly to campuses, the government fosters a healthier, and more informed generation capable of driving Uganda’s future development.
Students Appreciate the Medical Camp
According to Denise Kainomugisha, the Chairperson of the Makerere University School of Public Health (MakSPH) and Vice Minister of Health in the 92nd Guild, the Camp served as a vital platform for capacity building.
“The screening, the testing, the sports science, was all handled by the student volunteers under supervision” she confessed.
She also explained that the camp extended to broader public health goals and additionally fostered leadership and collaboration among students, who were encouraged to work together to address community health needs.
Concluding her remarks, Kainomugisha expressed gratitude to the respective partners for providing both financial support and the opportunity for students to take on active roles throughout the Medical Camp.
Agriculture & Environment
Makerere Hosts Inaugural Falling Walls Lab Competition as Innovators Pitch Solutions to National Challenges
Students and researchers from Makerere University and other institutions pitched 12 innovations addressing challenges in healthcare, clean energy, agriculture, waste management and community resilience during the inaugural Falling Walls Lab Kampala, held at the School of Public Health Auditorium, Makerere University.
The competition brought together emerging innovators to present solutions to practical challenges through a three minute pitch, followed by questions from a panel of judges.
Modelled on the Falling Walls format that originated in Berlin, the event required each participant to identify a “wall” a problem or barrier, and demonstrate how their innovation seeks to break it down.
Mudhasi wins with newborn jaundice screening device
Andrew Mudhasi of Makerere University emerged as the overall winner with a score of 90 per cent for a low cost medical device designed to improve newborn jaundice screening across different skin tones.
Mudhasi explained that the device uses optical sensor technology and a skin tone targeting algorithm to provide a rapid reading, with the aim of helping nurses and clinicians identify jaundice more efficiently.
During questions from the jury, Mudhasi said the device had not yet been tested on actual babies but had undergone laboratory testing using simulated skin tones.
He reported an accuracy rate of 94 per cent when the device was compared with laboratory spectrophotometers.
The innovation is intended initially for use in clinics and hospitals, with Mudhasi saying the team is also considering a version that could eventually allow mothers to screen babies at home.
Mudhasi’s innovation has previously received recognition at the African Business Concept Challenge and the iF Design Student Award, according to his presentation.
Rhonda’s innovation tackles diaper waste
Rhoda John of the University of Nairobi emerged in second place with 89.6 per cent for an innovation addressing the problem of used diaper waste.
Under the theme “Breaking the wall of diaper waste and drug soils,” Rhonda explained that her team extracts sodium polyacrylate, the absorbent polymer found in diapers, and replaces the sodium with potassium.
The resulting potassium based superabsorbent material is designed to act as a “water battery” in soil by absorbing and retaining water for plants during dry periods.
John said testing showed a 99 per cent increase in germination and a 23 per cent increase in drought resistance.
The innovation also seeks to reduce the amount of used diapers ending up in landfills and the environmental effects associated with their decomposition.
During the question and answer session, John explained that her team was working with government environmental officials in Nairobi on a pilot collection system to address the challenge of gathering used diapers at scale.
Mahera takes third place with herbal peptic ulcer treatment
Stuart Mahera of Makerere University finished third with 86.2 per cent for a herbal formulation targeting peptic ulcers.
Presenting under the theme “Breaking the wall of Nature and Modern Medicine,” Mahera argued that conventional treatment for peptic ulcers can involve multiple medicines and may be associated with side effects and antimicrobial resistance.
His proposed formulation, MARAC capsules, is intended as a monotherapy, combining properties required for peptic-ulcer treatment in a single capsule.
Mahera said his team had carried out quality control work, including characterisation and dose quantification, and had conducted preclinical trials on laboratory mice.
He also told the jury that an application had been submitted to the National Drug Authority as the team awaits the next stage of the regulatory process.
According to Mahera, the proposed seven day treatment would cost about Shs21,000, compared with the existing 14 day treatment approach.
Innovators present solutions to practical challenges
The remaining presentations covered a wide range of challenges.
Esther Nakungu of Utamu University presented Agri-Track, a digital record keeping solution intended to improve visibility, accountability and management of farm operations and financial information.
Dr. Jimmy Chachiga, a Makerere University participant, presented a solar photovoltaic cooker with a heat storage system designed to provide a cleaner and more reliable cooking option during both sunny and non sunny periods.
His presentation focused on reducing dependence on biomass fuels and addressing the challenges associated with intermittent solar energy.
Abdul Noor Luttamaguzi, a PhD student and senior government fisheries officer, presented a mobile application aimed at helping fish farmers and extension officers report, track and manage disease outbreaks.
Henry Duke Tamale presented a herbal cream targeting antibiotic resistant biofilm infections associated with diabetic foot ulcers.
Marvin Seruwu proposed adapting existing near infrared brain monitoring technology to help detect extra-axial brain bleeds in health facilities where access to CT and MRI equipment is limited.
His proposal seeks to repurpose existing technology towards a diagnostic need that could be particularly important in settings where advanced imaging facilities are not readily available.
Kennedy Kisame presented a poultry alert and diagnosis system combining satellite weather information with computer vision disease detection. The proposed system could be accessed through a smartphone application, SMS or USSD, making it potentially usable by farmers with limited internet access.
Frank Atwiine proposed a solar powered mobile diagnostic van designed to bring ultrasound and other diagnostic services closer to rural communities.
Johnson Makmot, a software and blockchain developer, presented a platform that combines GPS tracking and blockchain-based tokens to incentivise and verify plastic-waste collection in Kampala.
Dr. Nelson Ndugu, from a partner university, presented an artificial intelligence tool designed to translate agricultural research publications into local Ugandan languages and generate voice notes for radio-based extension delivery.
The final presentation came from Dr. Juliet Akola, a Ugandan post doctoral researcher at Mangosuthu University of Technology in South Africa.
Akola presented a community digital resilience initiative focused on mapping risks in Kampala’s informal settlements, including flooding, fire, poor sanitation, waste management and inadequate infrastructure.
Her proposal seeks to combine local community knowledge with geographical information systems and link identified risks to action plans involving municipalities and other stakeholders.
Nawangwe calls for more investment in innovation
Closing the event, Prof. Nawangwe congratulated all the participants and described their presentations as an important beginning for Makerere University, Uganda and the wider region.
Drawing on his experience attending the Falling Walls conference in Berlin, the Vice Chancellor said initiatives of this nature are important because innovation will play a major role in determining the future of countries.
He encouraged participants to make their pitches more precise by clearly identifying the problem they are addressing, explaining their proposed solution and demonstrating what they have already achieved.
Prof. Nawangwe also welcomed the participation of innovators from other universities and countries, noting that the Kampala event had attracted participants beyond Makerere.
He thanked the Africa Office of the Falling Walls Foundation for its role in bringing the initiative to Makerere and encouraged continued support for innovation.
The Vice Chancellor further linked innovation to Uganda’s growing youth population and the need to develop home-grown solutions to address challenges such as youth unemployment.
The inaugural Falling Walls Lab Kampala ultimately provided a platform for innovators to move ideas beyond the classroom and laboratory and demonstrate how research, technology and creativity can be applied to challenges affecting communities.
| Position | Winner | Institution | Score |
| 1st | Andrew Mudhasi | Makerere University | 90% |
| 2nd | Rhoda John | University of Nairobi | 89.6% |
| 3rd | Stuart Mahera | Makerere University | 86.2% |
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