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
The Makerere University School of Public Health (MakSPH) has formally transitioned leadership of the Department of Disease Control and Environmental Health, with Dr. David Musoke taking over from Dr. Esther Buregyeya, who served as Head of Department for more than nine years.
The handover marked both an appreciation of Dr. Buregyeya’s tenure and a renewed call for the Department to strengthen its position as a leading centre for Environmental Health, Occupational Health, Disease Control and Prevention.
Dr. Buregyeya, who took over the leadership of the Department in January 2017 and served until May 2026, described her tenure as a period of significant growth in teaching, research, community engagement and staff development. She emphasised that the achievements were a result of shared leadership and the collective efforts of Department members, School leadership and partners.
Among the key milestones during her tenure was the strengthening of the Department’s academic portfolio. The Department completed the review of the Bachelor of Environmental Health Science curriculum and supported the development of the Master’s programme in Environmental and Occupational Health. It also contributed to the development of the PhD by coursework and expanded online learning materials and short-course offerings, including training in Water, Sanitation and Hygiene and Occupational Health and Safety.
The Department also made progress in strengthening its laboratory capacity. With support from the School leadership, equipment was procured for the Environmental Health laboratory, which is currently based at Kasangati. The Department has also benefited from equipment donated through partnerships.
Another significant achievement highlighted during the handover was the development of human capacity. Several staff and research associates have pursued doctoral training, strengthening the Department’s pool of researchers and future academic leaders. Dr. Buregyeya noted that building this capacity was essential to ensuring continuity and preparing the next generation of faculty.
Dean commends leadership and mentorship
The Dean of MakSPH, Prof. Rhoda Wanyenze, commended Dr. Buregyeya for her leadership and credited the Department with developing a strong culture of mentorship and nurturing young professionals.
Prof. Wanyenze noted that although Disease Control is one of the School’s original departments, its membership has remained relatively young, with many emerging professionals being mentored and supported to grow within the School. She particularly applauded the Department for attracting and retaining talented Environmental Health graduates and for creating opportunities for research associates to contribute to the School’s work.
She also welcomed the establishment of the Master’s programme in Environmental Health, describing Environmental Health as an important frontier for public health. She challenged the Department to consider developing a PhD pathway in Environmental Health and to build a coordinated research agenda examining the links between the environment, infectious diseases, non-communicable diseases and broader health systems.
Prof. Wanyenze further called for greater investment in Occupational Health, noting the importance of workplace health, mental health, physical health and occupational safety, particularly as Uganda’s informal sector continues to grow. She also urged the Department to strengthen entomology and related research in vector-borne diseases.
A new chapter under Associate Professor David Musoke
Receiving the responsibility, Associate Professor David Musoke described his appointment as both an honour and a homecoming. He completed his Bachelor’s degree in Environmental Health at Makerere and later worked in the Department of Health Policy, Planning and Management before returning to Disease Control, where he has spent much of his professional career.
Assoc. Prof. Musoke paid tribute to Dr. Buregyeya, whom he described as a mentor and an example of shared leadership. He noted that during her tenure, the Department had grown from having a single undergraduate programme to developing a Master’s programme, contributing to PhD training and expanding its research portfolio into new and emerging areas. He also recognised the growth of early-career researchers, many of whom have progressed through doctoral training and into academic roles.
He pledged to build on these achievements while working closely with Department members, the Dean and other School departments. He also acknowledged the confidence placed in him by colleagues during the selection process and committed to working collectively to advance the Department.
A call to define the Department’s future
While celebrating the Department’s achievements, Prof. Wanyenze challenged the new leadership to develop a clear strategic agenda that distinguishes and strengthens the Department’s areas of expertise.
Prof. Wanyenze urged the Department to take forward the urban health agenda, particularly in light of Uganda’s rapid urbanisation and the emerging challenges associated with waste management, environmental health and the delivery of preventive health services in urban settings.
She further called for deliberate investment in people, infrastructure, research and partnerships. In particular, she encouraged the Department to use the new School infrastructure to develop a laboratory and to strategically support PhD training in areas where expertise is currently limited.
“You don’t have to carry this burden alone. There are people who can support the growth of the department,” Prof. Wanyenze said in encouraging the new leadership to build on the expertise already within the Department.
The handover concluded with the formal transfer of responsibility, followed by a presentation to Dr. Buregyeya in appreciation of her service and a cake-cutting ceremony bringing together the outgoing and incoming Heads of Department and members of the Department.
Health
MakCHS 2026 Orientation begins: Freshers Urged to Prioritise Responsibility, Integrity and Academic Excellence
New students joining Makerere University College of Health Sciences (MakCHS) have been urged to embrace responsibility, discipline, integrity and hard work as they embark on their journey towards becoming healthcare professionals.
The call was made during the opening session of the college’s orientation programme that began on the 4th August and will conclude on 7th August 2026. During the session, College leaders including the Principal and Deans welcomed students admitted to study various programmes at MakCHS. The speakers outlined expectations for academic and professional conduct.
The session was moderated by Professor Mark Kaddu, Deputy Dean-School of Medicine. Welcoming the freshers, he stressed the importance of hard work highlighting that ‘your academic documents will speak for you and excellence will open doors’.
The college leaders congratulated the students on securing admission to Makerere University, noting that many qualified applicants were unable to secure places. They encouraged the new entrants to make the most of the opportunity by committing themselves to excellence from the first day. The students were reminded that programmes offered by the college are rigorous full-time courses that demand commitment, discipline and consistency.
In his remarks, Professor Bruce Kirenga – Principal, MakCHS welcomed the new entrants and provided an overview of the College’s rich history, highlighting its growth and commitment to excellence in health professionals’ education. The Principal reaffirmed the college’s mission of impacting the national health agenda through transformational teaching, research and innovation for societal development. Students were encouraged to embrace the wide range of career pathways and professional opportunities available upon qualification, emphasizing that their training would equip them to make a meaningful contribution to society.
Stressing the importance of mind-set change which has also been introduced as a crosscutting course, the Principal urged the students to cultivate discipline, resilience, professionalism, and a passion for lifelong learning. “The journey you have embarked on is challenging, but it is achievable,” the Principal noted, reminding the students that many graduates before them successfully completed the programme through dedication and hard work. The address concluded with a call for the new students to remain focused, work diligently, and strive for academic excellence as they prepare to become the next generation of healthcare professionals who will transform their communities.
Professor Annettee Nakimuli, Dean – School of Medicine encouraged students to work collaboratively rather than viewing learning as a competition. She urged them to form productive study groups, support one another and take advantage of opportunities for mentorship, research and international exchange programmes available through the college. “We are here to support you throughout your journey,” she told the students, adding that strong academic performance could open doors to international exchanges, postgraduate training and research collaborations with universities around the world.
Professor Nakimuli warned students against academic dishonesty, including examination malpractice, falsification of academic records and illegal programme changes. She cautioned that such misconduct could lead to dismissal from the university, even after several years of study. Students were further advised to be vigilant against fraudsters who promise to alter admission records or transfer students into different academic programmes through unofficial channels.
In his remarks, Dr. Richard Muhindo, Dean-School of Health Sciences highlighted the importance of personal responsibility and wellbeing beyond academics. He encouraged students to manage their time wisely, avoid drug and alcohol abuse, stay away from gambling and maintain healthy lifestyles throughout their studies. Dr. Muhindo emphasized the importance of professionalism, reminding students that healthcare careers are built on compassion, teamwork and service to humanity. He encouraged students from different programmes to learn together, respect one another’s professions and build networks that will benefit them throughout their careers.
In his address to the freshers, Dr. David Nono who represented Dr. Annet Kutesa, Dean – School of Dentistry, encouraged students to embrace the opportunities before them by working hard, maintaining discipline, and striving for academic excellence. He emphasised the importance of achieving a strong academic record, noting that outstanding performance opens doors to competitive opportunities and future specialisation. The Dean also urged students to pursue postgraduate studies, reminding them that the dental profession requires highly qualified specialists. Reflecting on his own academic journey, he shared how dedication and continuous learning enabled him to study and work internationally before returning to serve the University. He concluded by encouraging students to remain focused, respect University rules, support one another, and make the most of their time at the institution as they prepare for successful professional careers.
Representing the Dean of the School of Biomedical Sciences, Professor Elisa Mwaka welcomed the freshers and congratulated them on earning admission to the College, urging them to embrace responsibility and discipline as they begin university life. Introducing the School of Biomedical Sciences to students, he explained that it handles core foundational courses like Physiology, Biochemistry, Pathology, Medical Microbiology, Immunology, Molecular Biology, among others that support their academic journey. Professor Mwaka reminded students that success at university depends on personal responsibility, regular class attendance, effective time management, and organised study habits, emphasizing that attendance of at least 80 percent of lectures and practical sessions is required to qualify for examinations. He also encouraged students facing academic or personal challenges to seek guidance from their lecturers early rather than waiting until examination time, and urged them to be punctual, prepare adequately for classes.
Mental health featured prominently during the orientation. Leaders acknowledged that health sciences programmes can be stressful encouraging students experiencing emotional or psychological challenges to seek support early rather than suffering in silence. They also called on students to avoid stigmatizing colleagues facing mental health difficulties.
Students were also cautioned to safeguard their personal belongings, particularly phones and laptops, as they settle into campus life. Officials warned that new students are often targeted by thieves during the first weeks of the academic year.
The opening session for the 2026 orientation concluded with a message of encouragement, with MakCHS leaders expressing confidence that the students would develop into competent, ethical and compassionate healthcare professionals capable of contributing to Uganda’s health sector and beyond.
The Orientation Programme continues until Friday, 7th August, and all students were strongly encouraged to attend every session to give themselves the best possible start to their academic journey. Important topics to be covered include IT services, registration procedures, university policies, mental health and well-being, and awareness and prevention of sexual harassment. These sessions are designed to equip students with the knowledge and support they need to thrive both academically and personally.
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