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 College of Health Sciences (MakCHS), College of Natural Sciences, and College of Business and Management Sciences presented graduands for conferment of degrees on the 14th January, 2025 which was the day 2 of the 75th Graduation Ceremony of Makerere University that commenced on Monday 13th January 2025.
MakCHS presented a total of 886 graduands including (23) Doctor of Philosophy (PhD), (456) Masters and (407) Bachelors. For the second year, MakCHS produced the researcher with the biggest number of publications, Prof. Moses Kamya and he received an award for the achievement.
Speaking to the congregation, Professor Barnabas Nawangwe – Vice Chancellor, Makerere University welcomed everyone to Makerere University’s 75th Graduation. He congratulated the 13,658 graduates, including 143 PhD recipients, 53% female graduates and 47% male graduands who will be awarded degrees through the graduation week. He commended the efforts of staff, parents, and sponsors in supporting the students’ journeys. Professor Nawangwe praised the achievements of Makerere’s Colleges and Schools, he commended MakCHS for the leadership in research and innovation flying the Makerere flag globally. He noted, ‘The College of Health Sciences is our flagship college for research and community engagement. This college accounts for 50% of all research grants won and also 50% of all the publications by the University. The College celebrated 100 years last year, making it the oldest college at Makerere University’.
Prof. Nawangwe reiterated Makerere’s transformation to a research-led institution supported by the government funded Makerere University Research and Innovations Fund (Mak-RIF). “We are addressing national priorities, such as improving the Parish Development Model and advancing e-governance,” he stated. The Vice Chancellor also congratulated Dr. Crispus Kiyonga on his appointment as Chancellor and urged graduates to leverage their education to create solutions for societal challenges.
Professor Nawangwe advised the graduands thus, ‘We have equipped you with the knowledge and skills that will make you employable or to create your own businesses and employ others. Do not despair if you cannot find employment, instead reflect on the immense opportunities around you and raise them as an entrepreneur.’
Professor Puleng LenkaBula, Principal and Vice-Chancellor of the University of South Africa (UNISA) delivered the commencement speech where she called on the graduands to remain resilient and emancipate Africa’s people. Her address titled “The Power of Resilience – African Woman, Find Your Generational Mission and Redefine Your Worth”, Professor LenkaBula highlighted the critical role of African women in shaping the continent’s destiny.
Professor LenkaBula expressed gratitude for being invited to such a significant occasion and extended greetings from South Africa, including from UNISA’s Chancellor, former South African President Dr. Thabo Mbeki. She praised Makerere University for its legacy of academic excellence and contributions to the African continent, emphasizing its role in anti-colonial struggles, post-colonial development, and its steadfast commitment to African unity. She called for a renewed focus on gender equity in academia and leadership, noting the disproportionate burdens faced by women in society. Citing the achievements of Makerere University in gender mainstreaming, she expressed optimism about the role of young leaders in dismantling patriarchal systems and fostering inclusive development.
Professor LenkaBula concluded her address to graduands with a call to action: “Your graduation is not merely a personal achievement but a contribution to Africa’s collective progress. History has thrust upon you the task of creating a future defined by resilience, innovation, and equality.”
In his remarks, Dr. Crispus Kiyonga – Chancellor, Makerere University congratulated graduands upon making it to the 75th Graduation Ceremony of Makerere University. Dr. Suruma expressed his appreciation of His Excellency the President and First Lady/Minister of Education and Sports for giving him the opportunity to serve Uganda and for the continuous support extended to Makerere University, requesting the congregation to join him and give them a warm applause. Dr. Kiyonga reiterated President Museveni’s directive to Makerere University to integrate the teaching of political economy across all courses to enhance students’ understanding of the country’s socioeconomic conditions. The directive, welcomed by the university’s top management, will be incorporated into the curriculum to align education with the needs of the people and the nation.
He expressed appreciation that the government has pledged to bolster Makerere’s research funding and he encouraged the University to strengthen partnerships with the private sector to commercialize innovations developed at the institution.
The new Chancellor pledged support to the University management in saving its land and urged that an agro-industrial park be established. “This park would serve three purposes: teaching, generating income, and acting as a demonstration site for communities across the country,” Dr. Kiyonga noted. He also emphasized the urgency of addressing Uganda’s food insecurity, highlighting that 40% of children in the Rwenzori region are stunted, with malnutrition affecting most regions of the country.
Dr. Kiyonga also pointed out Africa’s underperformance despite its vast resources, describing it as a contradiction. “It is our responsibility to change the conditions of our people and ensure Africa rises to its potential,” he urged.
The ceremony was graced by Hon. Joyce Moriku Kaducu, Minister of State for Primary Education, who represented the First Lady and Minister of Education and Sports, Hon. Janet Kataaha Museveni. Other dignitaries included members of Parliament, the judiciary, the diplomatic corps, and academics.
The Minister lauded Makerere University for its dedication to academic excellence and innovation. “Today reflects the resilience, hard work, and commitment of our graduates, supported by the university staff, management, and parents,” she said. The Minister commended the Vice Chancellor and management for fostering research and innovation while urging them to maintain robust quality control systems to uphold the institution’s integrity.
She also reflected on Makerere’s recent milestones, including the commissioning of a new the launch of the School of Graduate Studies and Research. “Your achievements stem from hard work, transparency, and accountability. They set Makerere apart as a leader in higher education,” she noted. Addressing the graduates, Hon. Kaducu encouraged them to apply their skills to solve societal challenges. “Makerere has equipped you with critical thinking and creativity. Use this to seize opportunities, make a difference, and shine wherever you go,” she concluded. During the 75th graduation ceremony held from the 13th -17th January, 2025, a total of 13,658 graduands were awarded degrees and diplomas in various disciplines. Of these, 143 received PhDs, 1,813 Masters Degrees, 243 postgraduate Diplomas, and 11,454 Bachelor’s Degrees. 53% of the graduands are female and 47% are male. 44% of the PhD graduands are female. A total of 491 graduands received first class degrees.
On 2nd December 2024, Assoc. Professor Bruce Kirenga officially took over as Principal of the College of Health Sciences, Makerere University (MakCHS) in a handover ceremony held in the College Board Room. Dr. Kirenga succeeds Professor Damalie Nakanjako, who successfully completed her four-year term.
The ceremony was attended by members of the MakCHS Administrative Board and key university leaders, including Ag. Deputy Vice Chancellor (Finance and Administration) Professor Henry Alinaitwe, Chief of Human Resources, Mr. Deus Tayari Mujuni, & Deputy University Secretary Mr. Simon Kizito, among others.
In her remarks, Professor Nakanjako reflected on her time in office with gratitude and pride since she assumed office in December 2020. She expressed her full support for MakCHS in contributing towards training and research in Makerere University.
Professor Nakanjako thanked the university top management for the support rendered to during her term of office as Principal. I thank family, friends and colleagues who supported and allowed me share my time with the college, especially beyond official hours.
Dr. Kirenga, a pulmonologist, researcher, and founding director of the Makerere University Lung Institute, expressed his heartfelt gratitude to the Makerere leadership and the search committee for entrusting him with the responsibility of steering the college. He noted; “It’s a true honour to have been entrusted with this role. The search process was rigorous, but I learned so much from the ideas shared by my colleagues—it was a truly honourable competition.”
With a vision for collaboration and growth, Dr. Kirenga outlined his priorities, including improving staffing, improving relationships with teaching hospitals, and addressing infrastructure needs. He emphasized a leadership style rooted in inclusivity and teamwork, saying, “Let’s create a common vision through consultation and work together. I’ll visit every unit in the college to hear directly from staff about their challenges, needs, and ideas for moving forward.”
Dr. Kirenga also shared plans to establish a forum of past leaders to harness their collective wisdom and ensure continuity in leadership.
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