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

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By Joseph Odoi

As Genetics research continues growing in Uganda, Bioethicists from Makerere University College of Health Sciences have stressed the importance of community engagement, genetic counselling and Public sensitization when conducting Genetics research in Uganda.

These recommendations were made at a research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.

While presenting findings of the ELSI-UG project titled “Ethical and social issues in informed consentprocesses in African genomic research”, the Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki from College of Health Sciences, Makerere University in a special way welcomed participants to the dissemination. He noted that involving communities in genetics and genomics research is very important when it comes to enhancing the understanding of genetics and genomic information by the general public.

‘’There has been an exponential increase in genetics and genomic research in the last two decades. 

However, this field of research is complex and is poorly understood by various research stakeholders. One way of enhancing understanding of genetics and genomic information by the general public is through community engagement. It is therefore crucial that communities are meaningfully involved in research processes right from conception. Community engagement provides a two-way communication channel through which researchers gain better understanding of community priorities, preferences, traditions, practices, and cultural sensitivities.’’ explained Prof. Mwaka.

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

He equally highlighted the need for translation of scientific language into local languages, genetic counsellors and consent in Genetics research adding that community engagement is crucial in building equitable research collaborations and trust between researchers and research communities.

Genetic and Genomics

According to National Institute of General Medical Sciences, Genetics is the scientific study of genes and how certain qualities, conditions or traits are passed from parents to their off springs. Genomics on the other hand involves using information about genes to: identify genetic disorders including future diseases so that doctors tailor treatment for individuals.

In same spirit, Dr. Moses Ochan, the Vice Chairperson of the Makerere University Research and Ethics Committee stressed the importance of sensitization of communities and researchers before any study is undertaken. According to him, sensitization enables communities understand the advantages and disadvantages of participating in a study thus making informed decisions.

Dr. Moses Ochan at the event.
Dr. Moses Ochan at the event.

In this United States National Institutes of Health funded study that sought to explore the knowledge,perceptions and experiences of stakeholders; researchers, bioethicists, REC members, research participants and caregivers/guardians on the informed consent process, and the ethical, legal and social implication of genomic research, 243 protocols were analyzed involving both local and international researchers

Findings

Return of individual genetic results to research participants

  • Of 122 parents/caregivers of adolescents in the study, 77.1 % expressed the desire to receive all results of their children’s genetic/genomic results.
  • 71.3 % of parents/caregivers agreed that children should be able to take part in research testing for genetic conditions that begin during childhood, even if there is no treatment that can alter the course of the condition
  • 85.3 % of parents/ caregivers expressed the desire to know genetic research results about children to see if they are more likely to get a disease in the future.
  • 71.3 % of parents/ caregivers agreed that Children should be able to take part in research testing for genetic conditions for which there is a treatment that begins during childhood that can alter the course of the condition
  • 62.3 % of parents/ caregivers  agreed that children should be able to take part in research testing for genetic conditions that start in adulthood and have no treatment that can alter the course
  • 89.4 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that will arise in their adult years, only if there is treatment or prevention that should begin in childhood
Some of the participants during the dissemination.
Some of the participants during the dissemination.

On the most important issues parents should consider in deciding whether or not to get genetic research results, 81.2% cited distress knowing that there are potential problems for other family members. Additionally, 45.0 % of parents and caregivers noted that receiving their child’s genetic results might worry their family; and 27.8% worried about stigma and discrimination

To address this, 69.2 % of parents and care givers said genetic counselling should be offered prior to a sample being taken to do genetic research

On perceptions on returning individual results of genomic research, parents and caregivers indicated that It is the researchers’ moral obligation to return clinically significant results; as such, genetic results should be communicated to them by  the study doctor. Most parents preferred being informed first before involving the children; and some mothers expressed the desire to exclude the child’s father from these discussions until they (mothers) have understood the implications of the results in question.

On the role of children in making decision makings on whether to regarding return of genetic results or not, there was no consensus on the ideal age for disclosure of results.  Some parents and caregivers pointed out that  involvement of children in these discussions should depend on child’s character, level of understanding and ability to cope with the implications..

On handling findings that have familial implications, there were mixed feelings about involving other family members. Parents, especially mothers expressed fear of attribution. They  thus suggested that the biological parents of the child should be the first ones to receive these results and then decide whether to involve other family members.

On the perceived challenges to return of results, parents and caregivers cited protracted delays in communicating genetics/genomics results; difficulty in tracing the child’s family, especially when the parents die and they are being cared for by other caregivers; risks of knowing unpleasant findings and paternity disputes.

Parents and caregivers offered several suggestions for the safe return of results of paediatric genomic research and these included the need to organize peer support and sensitization activities for adolescents participating in genetic studies; feedback of results should be done by a multidisciplinary team comprising of  clinicians, genetic counsellors, the child and parents. All concurred that other family members should be involved at a later stage.

Informed consent and sharing of biological samples in collaborative genomic research and biobanking

On consent to future use of samples, 88.8% of the 187 researchers that participated in the study indicated that there is need to provide donors with the option to consent. 62% indicated that informed consent forms should include multiple options regarding the types and conditions of future research for which the samples may be used (tiered consent). 6.2% said that participants should only consent for the current study, and any future studies on the stored samples would require re-consent. However, the majority of researchers felt that the need to reconsent places an unacceptable burden on the researchers (62%) and is prohibitively costly (59.4%)

On informed consent experiences and practices, it was found that most principal investigators (12/15) were not well conversant with the informed consent procedures of their respective studies because they delegate this to study coordinators and nurses/nurse counsellors. Most nurses/nurse counsellors lacked basic knowledge and understanding of genetics, including the risks of genetic research.

On Information disclosure, researchers noted that genetic research is complex and oftentimes research participants do not adequately understand the information disclosed them during the consenting process. They thus recommended the use of an iterative approach that encourages consultation with family and/or people research participants trust, use of simple language, use of visual aids and other media, and objective assessment of comprehension. The also reiterated the need for translating informed consent documents into local languages and the use of peer educators. Researchers emphasized the role of community engagement in community education and sensitization, ensuring that researchers respect local cultural values and beliefs, and dispelling of superstitions and misinformation.

  • The perceived challenges to the informed consent process included, the poor quality and inaccuracy of translations of ICF into local languages, inadequate understanding of informed consent, limited understanding of genetics by communities and some research team members, lack of professional genetic counselling services in Uganda, and mistrust of foreign collaborators.

On Export of human biological materials (HBM), researchers had a positive attitude towards the export of samples and expressed a desire for collaborative partnerships in genetics/genomic research and bio banking that are characterized by mutual respect and equity. However, they raised several concerns:

  • They seem not to be well conversant with the guidance provided by the national ethics guidelines on bio banking and
  • They all concurred that material transfer agreements (MTA) are key in the transfer of human biological materials across the national borders. However, they surmised that these  MTA are unfair and tend to favour international Collaborators. They felt that local researchers and research institutions are not empowered enough to bargain favorably during MTA negotiations. They also indicated that the national ethics guidelines are vague on role of RECs in MTA and data sharing agreement development. Furthermore, they indicated that Uganda lacks appropriate enabling ethical and legal frameworks to protect the interests of local scientists and research institutions
  • On sharing of the benefits of research, the researchers felt the ground was not leveled and there was neither equity nor fairness in sharing of GBR benefits in international collaborative research. They attributed this to the lack of scientific integrity and questionable research practices by collaborating researchers, lack of effective communication between collaborating partners, denial of access to shared data and samples by Northern collaborators, and felt that the oversight function of UNCST during MTA implementation is limited.
Prof. Nelson Sewankambo at the dissemination. He appreciated the quality of genetics and genomics study led by Prof. Mwaka Erisa.
Prof. Nelson Sewankambo at the dissemination. He appreciated the quality of genetics and genomics study led by Prof. Mwaka Erisa.

To address the issues at hand around genetics and genomics research, they made the following recommendations;

Recommendations to enhance comprehension of informed consent for genetic/genomic research and biobanking

  • Escalating community engagement: to sensitize the general public and educate them on genetics research and its implications
  • Iterative approach to informed consent where participants are given ample time to read/be read to consent information, ask questions, make consultations with family and trusted persons
  • Encouraging the use of simple language and various media during information disclosure.
  • There is need for harmonization of translations. A dictionary of translated key scientific and medical terms/concepts in research and clinical care in local languages should be developed
  • Develop specific national guidelines for genetic and genomic research in Uganda.
  • Research ethics committees should be trained in the basics of genetic research in order to ensure that they appreciate the ELSI and are competent enough to review genetic research.
  • The use of checklists for assessing understanding of consent should become mandatory and should also be included in the national ethics guidelines.
  • All stakeholders should read and understand the available national and international guidelines, policies, and regulations pertaining to genetics/genomic research and bio banking before negotiating Material transfer agreements.
  • Research ethics committees should be empowered to review and monitor the execution of MTAs during research implementation, and this should be clearly stipulated in the national ethics guidelines.
  • The national research regulators and individual institutions should join forces and devise mechanisms for tracking and monitoring the use of exported HBM and data.
  • Encouraging meaningful involvement of communities in Material transfer agreements negotiations, particularly regarding sharing of the benefits of research.
  • There should be capacity building for clinical genetics, particularly clinical geneticists and professional genetic counsellors
  • Community engagement activities should be scaled up to prepare communities for the return of genetic research results as and when they are available

More about the Project

This project explored the knowledge, perceptions and experiences of stakeholders on the informed consent process, and the ethical, legal and social implication of genomic research. The goal of the project was to contribute to a better understanding of the ethical legal and societal issues associated with genomic research in low resource settings. The study employed both quantitative and qualitative methods of data collection and analysis. Prospective evaluation was done using questionnaire surveys; focus group discussions; in-depth interviews; direct observation of informed consent processes; and assessment of the quality of informed consent

This study was funded by United States National Institutes of Health through The Human Heredity and

Health in Africa (H3Africa) initiative which is spearheading bio banking and genomics research in Africa for Africa.

The study was conducted between November 2018 to 2022 by a team of researchers led by Associate Prof. Erisa Mwaka as Principal Investigator.

 Research team:

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

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Makerere University Public Health students recount hands-on experience in Ebola case finding in Uganda

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By AFENET

The first day of the case-finding activity began with an orientation session at the Emergency Operations Center (EOC) offices at the Ministry of Health (MoH). The briefing was led by Dr. Wenani Daniel, Lubwaama Bernard, and Mr. Daniel Kadobera, who provided an overview of the current status of the Ebola Virus Disease (EVD) outbreak caused by Sudan ebolavirus (SEBV) in central Uganda. A key focus of the session was adherence to strict infection prevention and control (IPC) measures including maintaining a safe distance, avoiding direct contact, refraining from entering homes, and not eating or drinking in the field.

To enhance efficiency, the team was divided into three groups, ensuring that each group included at least one clinician for proper assessment of inpatient department (IPD) registers and patient files. The groups were then deployed to their respective sites: Saidinah Abubakar Islamic Hospital, Mulago National Referral Hospital, and a buffer zone within a 2km radius around Saidinah Hospital.

Read full article on AFENET

About AFENET

The African Field Epidemiology Network (AFENET) is a not-for-profit networking and service alliance of FE(L)TPs, and other applied epidemiology training programs in Africa. Makerere University School of Public Health (MakSPH) is one of four founder members of the network that has since grown to 40 members spanning Anglophone, Francophone, and Lusophone Africa.

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Meet Laura Silovsky, a Makerere University Graduate with Refugee Roots Bridging Continents

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Laura Silovsky (Right) at the graduation ceremony alongside fellow graduands Juma Said Tusubila and Ssali Abdallah Yahya on Day 2 of the 75th Graduation Ceremony. 75th Graduation Ceremony, Day 2, CoBAMS, CHS and CoNAS. 14th January 2025, Freedom Square, Makerere University, Kampala Uganda, East Africa.

On Tuesday January 14, 2025, under the radiant rays of the Ugandan sun, Laura Silovsky crossed the stage at Makerere University’s 75th Graduation Ceremony to receive her master’s degree in Public Health Disaster Management (MDM). Hers is a story of passion, dedication, and curiosity to rewrite the narrative of global education. Among 1,813 master’s graduates, Laura’s story stood out, as a blend of refugee roots, firefighting bravery, and a drive to decolonize learning.

Laura’s journey began long before her arrival in Kampala. Born in the UK to a father who fled from Czechoslovakia’s dictatorship in the 1970s, she grew up understanding displacement intimately. “My father was a refugee. Why would I fear refugees?” she once asked during her research fieldwork in Uganda’s West Nile, where her empathy bridged divides.

“People in Uganda may not expect that a muzungu could be the child of a refugee, but my family experienced displacement from (what was then) Czechoslovakia as well as the effects of the protracted conflict in Northern Ireland. Fortunate to have been born in the UK, I was raised to appreciate that disasters can affect anyone, anywhere, anytime.

After studying Sustainable Development at the University of Edinburgh, I worked on a behavior change project tackling non-communicable diseases in Scotland,” Laura says.

Laura Silovsky outside MakSPH on graduation day. 75th Graduation Ceremony, Day 2, CoBAMS, CHS and CoNAS. 14th January 2025, Freedom Square, Makerere University, Kampala Uganda, East Africa.
Laura Silovsky outside MakSPH on graduation day.

Her journey twisted through battling Australia’s bushfires and volunteering in a COVID pandemic, but it was Uganda’s welcoming refugee policies and Makerere University’s academic excellence that pulled her in next.

“In 2020, I relocated to Australia, just after the worst bushfires since records began and before the COVID-19 pandemic. The following two years, I qualified as a firefighter and supported bushfire recovery by volunteering with a community-based organization. After gaining some insight into these different disasters, I made the decision to return to higher education, and so I applied for the MDM programme at Makerere in 2022,” says Laura.

Armed with experience in emergency response, Laura was drawn to the field’s multidisciplinary nature and was convinced she needed to expand her expertise beyond immediate recovery efforts. She aimed to explore the full disaster management cycle and the intricate connection between health and environment.

“I needed to combine gaining academic knowledge with developing practical skills, so the field placement offered within the master’s degree in Public Health Disaster Management programme was a major motivator for me,” she shared.

The love for Uganda

Studying at the University of Edinburgh, Laura took a class in Kiswahili, that included a field-based short course on the Tanzanian shores of Lake Victoria. This experience sparked a desire to spend more time in the region, but she knew she needed to expand her skill set in order to genuinely add value to an organisation, if she was on the continent.

“I hoped studying at an East African university would teach me invaluable soft skills needed to work more effectively as an international team member. Makerere University School of Public Health (MakSPH) has a strong reputation, and I wanted to study somewhere that was locally grounded but globally recognized. Uganda’s progressive refugee policies were an added incentive to learn from experts here,” Laura says.

Laura’s intentional choice to decolonize her education

“I came to Uganda to learn from the experts here,” Laura declared, rejecting Eurocentric frameworks. “A big factor for me wanting to study at Makerere University was to decolonize my education, to recognize that the knowledge about responding to public health disasters and supporting refugees is here in Uganda,” she says.

She adds, “When I first arrived, I was quite vocal with my classmates about wanting to challenge that bias and truly acknowledge the wealth of knowledge within institutions like Makerere. The expertise here is invaluable, and I was intentional about decolonizing my education.”

Laura Silovsky with some of the 2022 MDM cohort outside MakSPH building after an exam. 75th Graduation Ceremony, Day 2, CoBAMS, CHS and CoNAS. 14th January 2025, Freedom Square, Makerere University, Kampala Uganda, East Africa.
Laura Silovsky with some of the 2022 MDM cohort outside MakSPH building after an exam.

At MakSPH, Laura immersed herself in courses like epidemiology, struggled briefly with statistics, but thrived on critical discussion groups and consultation with lecturers.

Collaborating with classmates from Uganda and across East Africa, she learned Luganda phrases and Somali proverbs, and built a “family” united by late-night study sessions and shared ambitions.

Beyond expectations

For Laura, studying at MakSPH was the best decision she could have made. She is still struck by the faculties’ wealth of academic and professional experience in public health and disaster management.

“I anticipated the programme would focus on applying the knowledge we gain to real-world scenarios. Of course, there were cultural differences that took me time to adjust to. I am grateful to faculty members such as Prof. Christopher Garimoi Orach, for his dedication and support, Prof. Elizeus Rutembemberwa for leading by example and valuing students’ time, and Dr. Justine Bukenya and Dr. Simon Kibira for offering their extensive support as my dissertation supervisors.”

The Fieldwork Attachment that Transformed Laura’s Research Experience

At Rhino Camp refugee settlement in West Nile, Laura’s work took on new meaning. Partnering with the Uganda Red Cross Society, she helped digitize data tools and walked long distances through Tika Zone, inspecting latrines and speaking with South Sudanese girls about their challenges in managing their menstrual health through their project that focused on schools.

Laura Silovsky conducting focus group discussions in a school in Rhino Camp in Northern Uganda with a team from the Uganda Red Cross Society. 75th Graduation Ceremony, Day 2, CoBAMS, CHS and CoNAS. 14th January 2025, Freedom Square, Makerere University, Kampala Uganda, East Africa.
Laura Silovsky conducting focus group discussions in a school in Rhino Camp in Northern Uganda with a team from the Uganda Red Cross Society.

“That experience in West Nile influenced my own research ideas, and it was a privilege to later return to Rhino Camp for data collection. I will always remember the long days walking with my research assistants through villages and being graciously welcomed by so many respondents,” she recalls, noting that the experiences crystallized her resolve to advocate for refugee dignity globally.

Life in Kampala  

Life in Kampala, with its vibrant energy and unique challenges, was truly a ‘full sensory experience’ for Laura. “My parents live in a small village, so Edinburgh felt like a big city when I moved there. And Edinburgh is much smaller and quieter than Kampala! But on weekends, I loved going downtown to shop at Owino Market or heading to Kyadondo Rugby Club for some pork.”

These spaces were perfect for Laura, offering new cultural experiences, including matooke, a starchy dish not found in the UK, which is mainly eaten in Uganda as a local delicacy and staple meal. Despite the differences in culture, sharing meals with classmates provided Laura with a comforting sense of connection.

Back to academics, navigating the university administrative processes wasn’t seamless initially for Laura, though. She says administrative hurdles such as paper-based systems, could change for the university to comfortably enjoy its strong reputation.

She recalls, right at the beginning, when she couldn’t find sufficient information online to support her to complete her application to join Makerere University. However, she later received support from the University’s International Office that deals with the welfare of international students.

Other university officials, from finance, librarians, program administrators, to academic registrars, played a key role in supporting her in her research and postgraduate training. “The system relies on dedicated individuals,” she noted, calling for digital reforms while praising MakSPH’s “atmosphere of innovation.”

“From my experience, such as when obtaining my transcript, the system relies heavily on individual staff members working around these administrative challenges. I’m grateful for those who helped me navigate this, and I’m interested to see how the university continues its digital transition, as it could greatly streamline processes in the future,” says Laura.

A Bittersweet Graduation Day

On graduation day, Laura’s pride mingled with melancholy. Watching families cheer on graduates, she reflected on classmates sidelined by finances or family crises.

Having gone through the course and interacted with Ugandan students, Laura hints on the common financial and personal challenges preventing many from graduating: family illness, new children, sponsorship falling through.

“I know so many of my classmates had worked so hard and were almost over the finish line but, due to financial challenges or other commitments at home, it wasn’t possible for them to graduate this year,” she says.

“For me, I was able to make the choice to pursue this program before having children, so I had fewer responsibilities at home, and I had also been saving for many years to get the money to pay tuition. Because I knew I had the money for tuition before I started, I could focus on studying. As you know, the reality for many people is that that’s not always possible.

“Small supports can transform student experiences,” Laura emphasized, advocating for systemic empathy. She sees great potential for more pastoral support at the university, citing peers from UCU and Kyambogo who benefited from accommodations like private breastfeeding spaces and flexible deadlines in special circumstances. Such initiatives, alongside financial aid, could significantly improve student welfare.

Still, the ceremony’s electric energy—watched via livestream by her parents in Europe—symbolized hope. “Uganda taught me that collaboration transcends borders,” she reflected.

Laura Silovsky (Right) at the graduation ceremony alongside fellow graduands Juma Said Tusubila and Ssali Abdallah Yahya. 75th Graduation Ceremony, Day 2, CoBAMS, CHS and CoNAS. 14th January 2025, Freedom Square, Makerere University, Kampala Uganda, East Africa.
Laura Silovsky (Right) at the graduation ceremony alongside fellow graduands Juma Said Tusubila and Ssali Abdallah Yahya.

“You could feel this sense of how hard everyone had worked to reach up to that point and that this was really an opportunity for them to celebrate, particularly by having family and friends around to be able to see. I love the PhD awards, when you see the PhD students coming out and their families rushing up to greet them. To me, that’s the best part of the ceremony, because a PhD requires so much work and commitment, and I think it’s really emotional to see everyone share this moment with their support networks,” she says.

Adding that; “…I was so grateful that the ceremony was streamed online. My family were watching live at home in Europe and it was so special that they could see me on camera and participate in the ceremony that way as well.”

Laura noted striking similarities between Makerere and Edinburgh’s ceremonies, especially the moment when students were asked to turn and thank their families, an emotional and powerful tradition.

Looking Ahead

Now in Tanzania, Laura eyes roles with international NGOs, armed with Ugandan-taught pragmatism and a zeal to challenge Europe’s refugee policies. “MakSPH gifted me more than a degree—it reshaped my worldview,” she says.

“As a muzungu with a Ugandan postgraduate education, I feel privileged to have benefitted from different educational perspectives, and I hope that the skills and knowledge I acquired during my time at Makerere will help me to secure a role with an international NGO. After witnessing the incredible support that Uganda provides to refugees, I also hope to advocate for more dignified policies concerning refugees in Europe,” she shares.

“There’s a spirit of innovation and dedication at Makerere, particularly when passionate lecturers like Prof. Orach, Dr. Roy Mayega, or Dr. Victoria Nankabirwa engaged students through discussion and sharing lived experiences. You could really see a different level of engagement within the students as well. Overall, I’ve had such a fantastic experience at Makerere University.”

“I wouldn’t change a thing,” she smiles.“Except maybe convince more Europeans to study here. Africa’s wisdom is the future.”

Davidson Ndyabahika

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Exciting PhD Opportunity in Health Innovation – Starting 2025

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The NTU-Mak delegation posing with some of the community health workers at the field office in Nakawuka, Wakiso district.

We are happy to share this exciting PhD studentship opportunity through the NTU-Makerere University partnership under the theme Health Innovation. Starting in 2025, this project will focus on One Health drivers of antibiotic-resistant bacterial infections in rural Ugandan communities.

The research will combine microbiological and public health approaches to explore the prevalence, transmission, and contributing factors of antibiotic-resistant bacteria in these communities. Key research questions include:

  • What human, animal, and environmental factors contribute to the spread of antibiotic-resistant bacteria?
  • How can Community Health Workers (CHWs) help mitigate their spread?

Requirements:

  • Essential: Willingness to spend time in both Uganda and the UK during the project and proficiency in Luganda.
  • Desirable: Wet lab microbiology skills.

For full details, visit:
<https://www.ntu.ac.uk/study-and-courses/postgraduate/phd/phd-opportunities/
studentships/health-innovation-phd-studentships/one-health-drivers-of-antibi
otic-resistant-bacterial-infections-in-rural-ugandan-communities
> NTU Health Innovation PhD Studentships.

Application Deadline: Friday, 14 February 2025.

For inquiries, contact Dr. David Musoke at dmusoke@musph.ac.ug or Jody Winter at jody.winter@ntu.ac.uk.

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