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

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3 years ago

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Part of the genetics and genomics study team and participants at the research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.
Part of the genetics and genomics study team and participants at the research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.

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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The silent teachers: why body donation matters

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6 days ago

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June 5, 2026

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Assoc. Prof. Erisa Sabakaki Mwaka, Consultant Orthopaedic Surgeon and Chair, Department of Anatomy, College of Health Sciences (CHS). Makerere University, Kampala Uganda, East Africa.

By Assoc. Prof. Erisa Mwaka and Joyce Nabukalu-Kiwanuka

In every hospital, there is a moment when knowledge becomes a matter of life and death. A doctor must know where to place an incision, how to avoid damaging major organs, how to identify a nerve, how to deliver a baby safely, how to interpret a scan, or how to explain disease to a worried family. That knowledge does not begin in the operating theatre, it begins much earlier, in the anatomy laboratory.

For generations, the study of the human body has been the foundation of medical education. The regular use of human bodies for medical training purposes began in the late Middle Ages and spread during the 18th and 19th centuries. Initially, anatomists depended on gallows, poor houses, mental asylums, or jails as sources of bodies. However, the 1960s and 1970s saw the emergence of wilful body donation. Before students become doctors, surgeons, dentists, nurses, physiotherapists, radiographers, and other health professionals, they must first understand the human body in its real form. They must learn not only from books and diagrams, but from the body itself. This is why cadavers, though silent, remain the most important teachers in medical education. In simple terms, a cadaver is a dead human body used by health professions students to study anatomy; and Anatomy is the study of the physical structure and organization of the human body, both at macroscopic and microscopic levels.

As the Department of Anatomy at Makerere University College of Health Sciences  prepares to commemorate the “silent teachers” whose bodies are used for medical education on June 11, 2026,  Uganda is invited to reflect on a subject that is rarely discussed in the public domain, willed body donation. Body donation simply means a person willfully donates their body for educational purposes after death, and consent to it in life. This is a sensitive topic, but it is also a deeply human one. It touches our beliefs, families, culture, understanding of death, and responsibility to future generations.This commemoration ceremony is not symbolic but, it is a public statement that the contribution of silent teachers is sacred, educational, and deeply appreciated.

To donate one’s body after death is not an ordinary decision; it is an altruistic act of extraordinary generosity. It is a final gift to society. It allows health professions students to learn and appreciate the human body before they treat living patients. Cadavers are therefore not “specimens”, they are silent teachers and partners in medical education who continue to serve humanity even after death. Learning anatomy using a cadaver helps students to understand and appreciate the complexity of the human body, appreciate its natural variations, and develop the confidence and competence needed to serve the public. Students are also taught laboratory etiquette that emphasises dignity, empathy, and utmost respect for the cadavers, which attributes they carry into the clinical years when they interface with hospital patients.

In Uganda, where the demand for health workers continues to grow, medical education must be strengthened at every level. Our country needs well-trained doctors and health professionals who can serve in hospitals, health centres, universities, research institutions, and communities. But good training requires good teaching resources. One of these resources are the silent teachers who never complain, but impart immeasurable knowledge to future health professionals. Modern technology has introduced many useful tools into medical education. Students can now learn from videos, computer applications, digital images, plastic models, three-dimensional models, and virtual platforms. These tools are important and should be embraced, however, they cannot completely replace learning from the real human body. A cadaver teaches what a diagram cannot fully show; the true position of organs, the texture of tissues, the relationship between structures, and the natural differences that exist from one person to another. More importantly, cadaver-based learning teaches respect. It reminds students that medicine is not simply a technical profession, it is a calling rooted in human dignity. The first lesson students learn in the anatomy laboratory is that the body before them belonged to a person who had a name, a family, a story, and a life. That lesson shapes how they later treat patients.

Currently, most, if not all universities in Uganda, and similar settings in Africa use unclaimed bodies for learning Anatomy. The use of cadavers in Uganda is governed by the Penal Code (Anatomy Rules) of 1957 that permits public hospitals to transfer bodies unclaimed for at least 14 days to a medical training institution like Makerere University. Unfortunately, these cadavers are used without the consent of the deceased because most of them are unknown and with no known relatives to claim them. Many opponents to the use of unclaimed bodies opine that the practice is unethical. There is a global push toward ethical use of cadavers in medical education, where a person consents and bequeathes his/her body for medical education when still alive. For this practice to be sustainable, there is a need for a well regulated body donation program. Unfortunately, the concept of willful body donation is still not well understood by many people, and neither has it been a topic of public debate. Further, there are lots of myths surrounding death and dying in Africa, including Uganda that have hindered the establishment of successful body donation programs. Willingness to donate bodies for medical education is however, influenced by several factors including cultural and religious beliefs, respect for the dead and the need to fulfil burial rites, fear for mutilation and disrespect, to mention a few. These concerns are real and should not be dismissed. But they should be addressed with accurate information, openness, and utmost respect.

It is important to understand that body donation does not mean that a person is forgotten. On the contrary, it creates a legacy. A body donor may teach hundreds of future health professionals, in that way, one person’s final act of generosity can touch and save countless lives.  This is kind of patriotism is largely unkown in Uganda and we do not speak about enough. We often talk about serving our country through leadership, business, farming, teaching, parenting, or community service. But there is also service beyond life. Body donation is one way of saying: “Even when I am gone, let me contribute to the health of my people.”

Currently, Uganda now has more than 15 universities training medical students and the demand for cadavers for learning anatomy is on the rise. Actually, the supply of cadavers cannot fulfil the demand, and medical educationists need to find alternative source of cadavers. Wilful body donation is the answer. 

Uganda needs a national conversation on body donation. There is a need for deliberative public engagement involving various stakeholder including the public, religious and cultural leaders, civic leaders, the media, educationists, health professionals, medical training institutions, etc. 

This commemoration ceremony will involve inter-denominational prayers for the silent teachers, and a reflection of their contribution to healthcare in Uganda. We hope this ceremony will provoke public debate on a subject that is hitherto considered a taboo by many. We talked about some of these issues last year, in the first ever such ceremony in Uganda, and have received several requests for more information on the procedure for donating one’s body for teaching purposes upon death. Like President Obama’s said, “yes we can”, an the dialogue starts from you and me. You are all invited for the commemoration ceremony at 9.00 am on June 11, 2026, at the Makerere University School of Public Health auditorium on main campus. 

To donate one’s body is to give a final lesson, a final service, and a lasting gift to the nation.

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Makerere Health Services Guidance on Ebola Virus Disease (EVD)

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2 weeks ago

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June 1, 2026

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How to protect yourself and your loved ones from Ebola. Ministry of Health, Kampala Uganda, East Africa.

The Democratic Republic of Congo (DRC) and Uganda recently reported an outbreak of Ebola Virus Disease (EVD), which is a serious and often deadly disease caused by a person being infected by the Ebola virus.

The virus spreads through direct contact with body fluids such as blood, saliva, faeces, vomit, urine, sweat or genital fluids from a person who is infected with EVD.

The symptoms of EVD usually develop after 8 – 10 days from contact with an infected person and may include fatigue, high fever, headache, sore throat, muscle and joint pains, vomiting and diarrhea and in severe cases, bleeding.

What should we do as the Makerere University community?

The Chief, Makerere Health Services, Prof. J.K. Byamugisha advises as follows:

  1. Avoid unnecessary contact such as shaking hands, hugging etc.
  2. Place alcohol disinfectants or hand washing equipment at all entry points within the University and ensure everyone is using them.
  3. Students should sit in single-person chairs while in class, avoiding contact with their neighbours.
  4. Do not sit too close to one another especially in frequently crowded places such as classrooms, library or any other waiting area.
  5. While at the University Hospital, wash hands a the gate, use alcohol disinfectant at the reception.
  6. All patients should have a maximum of one caretaker – others can check on them by calling.
  7. Avoid bringing luggage to the University Hospital.
  8. Target to do as instructed by the health worker.
  9. For further information and guidance on Ebola, please call Dr. Charles Basigara on Tel: 0702 966652 and Sr. Eunice Namubiru on Tel: 0779 950978 (Contact persons for the University Health Services)

Additionally, always look out for and ensure full compliance with Ministry of Health (MoH) Infection Prevention and Control measures such as the one below.

How to protect yourself and your loved ones from Ebola. Ministry of Health, Kampala Uganda, East Africa.
How to protect yourself and your loved ones from Ebola.
How to report suspected Ebola cases to Health Authorities. Ministry of Health, Kampala Uganda, East Africa.
How to report suspected Ebola cases to Health Authorities.

Please find attached detailed communications from Prof. Byamugisha and
the Permanent Secretary Ministry of Health.

Makerere-Health-Services-Ebola-Virus-Disease-Memo-28-May-2026Download
Ministry of Health Circular on Mass GatheringsDownload

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Call for Applications: Masters Support in Self-Management Intervention for Reducing Epilepsy Burden

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2 weeks ago

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May 25, 2026

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An aerial photo of the College of Health Sciences (CHS), Makerere University showing Left to Right: The Sir Albert Cook Memorial Library, School of Biomedical Sciences, Davies Lecture Theatre, School of Public Health, Mulago Specialised Women and Neonatal Hospital (MSWNH)-Background Left and Nakasero Hill-Background Right, Kampala Uganda, East Africa.

The Makerere University College of Health Sciences and Case Western Reserve University, partnering with Mbarara University of Science and Technology, are implementing a five-year project titled “Self-management Intervention for Reducing Epilepsy Burden Among Adult Ugandans with Epilepsy.”

The program is funded by the National Institute of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS). One aspect of the program is to provide advanced degree training to qualified candidates interested in pursuing clinical and research careers in Epilepsy. We aim to grow epilepsy research capacity, including self-management approaches, in SSA.

The Project is soliciting applications for Master’s Research thesis support focusing on epilepsy-related research at Makerere University and Mbarara University, cohort 3, 2026/2027.

Selection criteria

  • Should be a Master’s student of the following courses: MMED in Internal Medicine, Paediatrics, Surgery and Neurosurgery, Psychiatry, Family Medicine, Public Health, Master of Health Services Research, MSc. Clinical Epidemiology and Biostatistics, Nursing, or a Master’s in the Basic Sciences (Physiology, Anatomy, Biochemistry, or any other related field).
  • Should have completed at least one year of their Master’s training in the courses listed above.
  • Demonstrated interest in Epilepsy and Neurological diseases, care and prevention, and commitment to develop and maintain a productive career, and devoted to Epilepsy, Clinical Practice, and Prevention.

Research Programs:

The following are the broad Epilepsy research priority areas (THEMES), and applicants are encouraged to develop research concepts in the areas of: Applicants are not limited to these themes; they can propose other areas.

  • The epidemiology of Epilepsy and associated risk factors.
  • Determining the factors affecting the quality of life, risk factors, and outcomes (mortality, morbidity) for Epilepsy, epilepsy genetics, and preventive measures among adults.
  • Epilepsy in childhood and its associated factors, preventative measures etc.
  • Epilepsy epidemiology and other Epilepsy related topics.
  • Epilepsy interventions and rehabilitation

In addition to a formal master’s program, trainees will receive training in bio-ethics, Good Clinical Practice, behavioral sciences research, data and statistical analysis, and research management.

The review criteria for applicants will be as follows:

·      Relevance to program objectives

  • Quality of research and research project approach
  • Feasibility of study
  • Mentors and mentoring plan; in your mentoring plan, please include who the mentors are, what training they will provide, and how often they propose to meet with the candidate.
  • Ethics and human subjects’ protection.

Application Process

Applicants should submit an application letter accompanied by a detailed curriculum vitae, two recommendation letters from Professional referees or mentors, and a 2-page concept or an approved full proposal describing your project and addressing Self-Management Intervention for Reducing Epilepsy Burden Among Adults or an epilepsy-related problem.

For more information, inquiries, and additional advice on developing concepts, don’t hesitate to get in touch with the following:

Makerere University College of Health Sciences

Prof. Mark Kaddumukasa:  kaddumark@yahoo.co.uk

Mbarara University

Ms. Josephine N Najjuma: najjumajosephine@yahoo.co.uk

Only short-listed candidates will be contacted for Interviews.

A soft copy should be submitted to the Administrator of the Epilepsy Project. Email: smireb2@gmail.com; Closing date for the Receipt of applications is 5th July 2026.

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