Health
Genetics & Genomics Research Dissemination; Makerere Bioethicists Emphasize the Importance of Community Engagement
By Joseph Odoi
As Genetics research continues growing in Uganda, Bioethicists from Makerere University College of Health Sciences have stressed the importance of community engagement, genetic counselling and Public sensitization when conducting Genetics research in Uganda.
These recommendations were made at a research dissemination workshop held on the 8th December 2022 at Makerere University College of Health Sciences.
While presenting findings of the ELSI-UG project titled “Ethical and social issues in informed consentprocesses in African genomic research”, the Project Principal Investigator -Associate Professor Mwaka Erisa Sabakaki from College of Health Sciences, Makerere University in a special way welcomed participants to the dissemination. He noted that involving communities in genetics and genomics research is very important when it comes to enhancing the understanding of genetics and genomic information by the general public.
‘’There has been an exponential increase in genetics and genomic research in the last two decades.
However, this field of research is complex and is poorly understood by various research stakeholders. One way of enhancing understanding of genetics and genomic information by the general public is through community engagement. It is therefore crucial that communities are meaningfully involved in research processes right from conception. Community engagement provides a two-way communication channel through which researchers gain better understanding of community priorities, preferences, traditions, practices, and cultural sensitivities.’’ explained Prof. Mwaka.
He equally highlighted the need for translation of scientific language into local languages, genetic counsellors and consent in Genetics research adding that community engagement is crucial in building equitable research collaborations and trust between researchers and research communities.
Genetic and Genomics
According to National Institute of General Medical Sciences, Genetics is the scientific study of genes and how certain qualities, conditions or traits are passed from parents to their off springs. Genomics on the other hand involves using information about genes to: identify genetic disorders including future diseases so that doctors tailor treatment for individuals.
In same spirit, Dr. Moses Ochan, the Vice Chairperson of the Makerere University Research and Ethics Committee stressed the importance of sensitization of communities and researchers before any study is undertaken. According to him, sensitization enables communities understand the advantages and disadvantages of participating in a study thus making informed decisions.
In this United States National Institutes of Health funded study that sought to explore the knowledge,perceptions and experiences of stakeholders; researchers, bioethicists, REC members, research participants and caregivers/guardians on the informed consent process, and the ethical, legal and social implication of genomic research, 243 protocols were analyzed involving both local and international researchers
Findings
Return of individual genetic results to research participants
- Of 122 parents/caregivers of adolescents in the study, 77.1 % expressed the desire to receive all results of their children’s genetic/genomic results.
- 71.3 % of parents/caregivers agreed that children should be able to take part in research testing for genetic conditions that begin during childhood, even if there is no treatment that can alter the course of the condition
- 85.3 % of parents/ caregivers expressed the desire to know genetic research results about children to see if they are more likely to get a disease in the future.
- 71.3 % of parents/ caregivers agreed that Children should be able to take part in research testing for genetic conditions for which there is a treatment that begins during childhood that can alter the course of the condition
- 62.3 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that start in adulthood and have no treatment that can alter the course
- 89.4 % of parents/ caregivers agreed that children should be able to take part in research testing for genetic conditions that will arise in their adult years, only if there is treatment or prevention that should begin in childhood
On the most important issues parents should consider in deciding whether or not to get genetic research results, 81.2% cited distress knowing that there are potential problems for other family members. Additionally, 45.0 % of parents and caregivers noted that receiving their child’s genetic results might worry their family; and 27.8% worried about stigma and discrimination
To address this, 69.2 % of parents and care givers said genetic counselling should be offered prior to a sample being taken to do genetic research
On perceptions on returning individual results of genomic research, parents and caregivers indicated that It is the researchers’ moral obligation to return clinically significant results; as such, genetic results should be communicated to them by the study doctor. Most parents preferred being informed first before involving the children; and some mothers expressed the desire to exclude the child’s father from these discussions until they (mothers) have understood the implications of the results in question.
On the role of children in making decision makings on whether to regarding return of genetic results or not, there was no consensus on the ideal age for disclosure of results. Some parents and caregivers pointed out that involvement of children in these discussions should depend on child’s character, level of understanding and ability to cope with the implications..
On handling findings that have familial implications, there were mixed feelings about involving other family members. Parents, especially mothers expressed fear of attribution. They thus suggested that the biological parents of the child should be the first ones to receive these results and then decide whether to involve other family members.
On the perceived challenges to return of results, parents and caregivers cited protracted delays in communicating genetics/genomics results; difficulty in tracing the child’s family, especially when the parents die and they are being cared for by other caregivers; risks of knowing unpleasant findings and paternity disputes.
Parents and caregivers offered several suggestions for the safe return of results of paediatric genomic research and these included the need to organize peer support and sensitization activities for adolescents participating in genetic studies; feedback of results should be done by a multidisciplinary team comprising of clinicians, genetic counsellors, the child and parents. All concurred that other family members should be involved at a later stage.
Informed consent and sharing of biological samples in collaborative genomic research and biobanking
On consent to future use of samples, 88.8% of the 187 researchers that participated in the study indicated that there is need to provide donors with the option to consent. 62% indicated that informed consent forms should include multiple options regarding the types and conditions of future research for which the samples may be used (tiered consent). 6.2% said that participants should only consent for the current study, and any future studies on the stored samples would require re-consent. However, the majority of researchers felt that the need to reconsent places an unacceptable burden on the researchers (62%) and is prohibitively costly (59.4%)
On informed consent experiences and practices, it was found that most principal investigators (12/15) were not well conversant with the informed consent procedures of their respective studies because they delegate this to study coordinators and nurses/nurse counsellors. Most nurses/nurse counsellors lacked basic knowledge and understanding of genetics, including the risks of genetic research.
On Information disclosure, researchers noted that genetic research is complex and oftentimes research participants do not adequately understand the information disclosed them during the consenting process. They thus recommended the use of an iterative approach that encourages consultation with family and/or people research participants trust, use of simple language, use of visual aids and other media, and objective assessment of comprehension. The also reiterated the need for translating informed consent documents into local languages and the use of peer educators. Researchers emphasized the role of community engagement in community education and sensitization, ensuring that researchers respect local cultural values and beliefs, and dispelling of superstitions and misinformation.
- The perceived challenges to the informed consent process included, the poor quality and inaccuracy of translations of ICF into local languages, inadequate understanding of informed consent, limited understanding of genetics by communities and some research team members, lack of professional genetic counselling services in Uganda, and mistrust of foreign collaborators.
On Export of human biological materials (HBM), researchers had a positive attitude towards the export of samples and expressed a desire for collaborative partnerships in genetics/genomic research and bio banking that are characterized by mutual respect and equity. However, they raised several concerns:
- They seem not to be well conversant with the guidance provided by the national ethics guidelines on bio banking and
- They all concurred that material transfer agreements (MTA) are key in the transfer of human biological materials across the national borders. However, they surmised that these MTA are unfair and tend to favour international Collaborators. They felt that local researchers and research institutions are not empowered enough to bargain favorably during MTA negotiations. They also indicated that the national ethics guidelines are vague on role of RECs in MTA and data sharing agreement development. Furthermore, they indicated that Uganda lacks appropriate enabling ethical and legal frameworks to protect the interests of local scientists and research institutions
- On sharing of the benefits of research, the researchers felt the ground was not leveled and there was neither equity nor fairness in sharing of GBR benefits in international collaborative research. They attributed this to the lack of scientific integrity and questionable research practices by collaborating researchers, lack of effective communication between collaborating partners, denial of access to shared data and samples by Northern collaborators, and felt that the oversight function of UNCST during MTA implementation is limited.
To address the issues at hand around genetics and genomics research, they made the following recommendations;
Recommendations to enhance comprehension of informed consent for genetic/genomic research and biobanking
- Escalating community engagement: to sensitize the general public and educate them on genetics research and its implications
- Iterative approach to informed consent where participants are given ample time to read/be read to consent information, ask questions, make consultations with family and trusted persons
- Encouraging the use of simple language and various media during information disclosure.
- There is need for harmonization of translations. A dictionary of translated key scientific and medical terms/concepts in research and clinical care in local languages should be developed
- Develop specific national guidelines for genetic and genomic research in Uganda.
- Research ethics committees should be trained in the basics of genetic research in order to ensure that they appreciate the ELSI and are competent enough to review genetic research.
- The use of checklists for assessing understanding of consent should become mandatory and should also be included in the national ethics guidelines.
- All stakeholders should read and understand the available national and international guidelines, policies, and regulations pertaining to genetics/genomic research and bio banking before negotiating Material transfer agreements.
- Research ethics committees should be empowered to review and monitor the execution of MTAs during research implementation, and this should be clearly stipulated in the national ethics guidelines.
- The national research regulators and individual institutions should join forces and devise mechanisms for tracking and monitoring the use of exported HBM and data.
- Encouraging meaningful involvement of communities in Material transfer agreements negotiations, particularly regarding sharing of the benefits of research.
- There should be capacity building for clinical genetics, particularly clinical geneticists and professional genetic counsellors
- Community engagement activities should be scaled up to prepare communities for the return of genetic research results as and when they are available
More about the Project
This project explored the knowledge, perceptions and experiences of stakeholders on the informed consent process, and the ethical, legal and social implication of genomic research. The goal of the project was to contribute to a better understanding of the ethical legal and societal issues associated with genomic research in low resource settings. The study employed both quantitative and qualitative methods of data collection and analysis. Prospective evaluation was done using questionnaire surveys; focus group discussions; in-depth interviews; direct observation of informed consent processes; and assessment of the quality of informed consent
This study was funded by United States National Institutes of Health through The Human Heredity and
Health in Africa (H3Africa) initiative which is spearheading bio banking and genomics research in Africa for Africa.
The study was conducted between November 2018 to 2022 by a team of researchers led by Associate Prof. Erisa Mwaka as Principal Investigator.
Research team:
- Associate Prof. Erisa Mwaka
- Dr. Ian Munabi
- Assoc. Prof. Joseph Ochieng
- Dr. Janet Nakigudde
- Prof. Nelson Sewankambo
Health
Mak Researchers Partner with Safe Bangle Technologies to Roll out a Real-Time Domestic Violence Reporting Bracelet
By Joseph Odoi
A Consortium of Researchers from Makerere University School of Public Health/Resilient Africa Network (MakSPH/RAN), Medical College of Wisconsin (MCW), Somero Uganda together with Safe Bangle Technologies have rolled out a real time domestic violence reporting bracelet.
This roll out was made possible with support from the United States Agency for International Development (USAID) under the PARTNERSHIPS FOR ENHANCED ENGAGEMENT IN RESEARCH (PEER) program and the National Academies of Sciences.
Dr. Juliet Kiguli, the Principal Investigator from Makerere University, along with Dr. Roy Mayega, Deputy Chief of Party at RAN, and Dr. Agnes Nyabigambo, the study coordinator, initiated the PEER program to identify entry points for testing SafeBangle Technologies (a social enterprise based at Resilient Africa Network (RAN) with a mission to create a safer and more secure environment for women and children through innovative, affordable, and creative technology solutions to curb GBV in Africa.) wearable safety bracelet in the informal settlements. This decision stemmed from findings of increased intimate partner violence (IPV) and gender-based violence (GBV) in three informal settlements in Kampala, Uganda, following a longitudinal study, geospatial mapping, and interviews. The project, titled ‘The Impact of the COVID-19 Pandemic on Gender-Based Violence among Women and Girls in Informal Settlements in Kampala,’ highlighted the urgent need for affordable and immediate reporting mechanisms for violence.”
‘’While carrying out a study after the Covid-19 Pandemic, we identified gaps when it comes to reporting and response to Gender Based Violence (GBV) among women in informal settlements. Therefore, we used incorporated the SafeBangle intervention to solve the problem of lack of affordable and immediate reporting mechanisms for violence using a bracelet that reports violence in real time’’ explained Dr. Kiguli.
Innovation details
According to Saul Kabali and Messach Luminsa, the innovators behind SafeBangle from SafeBangle Technologies, hosted at the Resilient African Network Lab. ‘’The inspiration behind SafeBangle came from a deeply personal place. ‘’We heard countless stories of women who couldn’t call for help during moments of danger. We were deeply affected by the story of Aisha, a young woman in a rural village who was attacked while walking home alone at night. With no way to call for help, she felt helpless and vulnerable. This incident made us realize the critical need for immediate reporting alert tools, accessible to women like Aisha. We knew technology could play a crucial role and this incident awakened a strong desire in us to create a solution’’
“While developing SafeBangle, we tested with the users in both rural and urban contexts. We piloted the innovation around Kampala with support from Digital Human Righs Lab and Naguru Youth Health Network as well as it in five districts of Karamoja region with support from Save the Children and Response Innovation Lab. Right now it has become handy in Kamapala‘s informal settlements. We envision a future where SafeBangle becomes a standard tool in the fight against GBV, ensuring every woman feels safe and secure as it has the potential to transform how we respond to GBV in Africa” added Kabali.
HOW THE SAFEBANGLE TECHNOLOGY WORKS
The SafeBangle is wearable technology similar to a smartwatch that sends an alarm by SMS to people chosen by a woman herself if she feels threatened.
In terms of the acceptability of the SafeBangle innovation as a solution to GBV among at-risk women in informal settlements Of the 72 adolescent girls and women who received the SafeBangle, 22 activated the reporting button, resulting in 19 receiving immediate and appropriate support, including counseling, police intervention, and health services.
All adolescent girls and women who experienced GBV received a phone call from Somero Uganda to discuss the most appropriate intervention, including counseling, police cases being handled by the probation office, referral for health services, and post-exposure prophylaxis. All the GBV survivors received support and are still receiving continuous follow-up.
Researchers conducted a survey among 644 girls and women in Kinawataka (Nakawa Division) and Bwaise (Kawempe Division) to gain insights into awareness and understanding of sexual and gender-based violence among adolescent girls and women in informal settlements. The survey measured socioeconomic factors, mental health symptoms, and exposure to GBV. Focus group interviews were conducted with a separate sample of women over 18 in the settlements to explore responses to GBV.
A tabular representation of the key findings and lessons learned from your study on gender-based violence (GBV)
| Key Findings | Lessons learned |
| Prevalence of GBV. – Overall prevalence: 34.1% of women and girls reported experiencing GBV. – Among adolescents (15-19 years): Over 50% reported experiencing GBV. | – The pandemic highlighted the need for accessible and comprehensive support services for GBV survivors. – Schools emerged as crucial safe spaces for girls, emphasizing their well-being during crises. – Economic independence proved crucial, enabling women to leave abusive environments. – Involving men and boys as allies in GBV prevention efforts is essential. |
| Age-related trends | – GBV prevalence tends to decrease with increasing age. |
| Physical and health consequences. | – Women and girls suffered physical violence, injuries, and deaths, primarily from domestic violence and unsafe abortions due to limited healthcare access. – GBV resulted in unintended pregnancies, unsafe abortions, and increased risk of sexually transmitted diseases (STIs) like HIV/AIDS. |
| Social and economic impact. . | – GBV contributed to family breakups, strained marriages due to financial stress. – Economic hardships forced some women and girls into transactional sex, exposing them to further health risks and exploitation. – Pandemic-related job losses and economic constraints increased financial dependence on abusers, trapping women in violent situations. – School closures and increased household responsibilities limited women’s job opportunities and subjected them to sexual harassment. |
| Psychological effects | – Survivors experienced guilt, shame, anxiety, fear, and suicidal thoughts due to ongoing abuse. |
| Long-term effects | – Post-COVID-19, survivors faced disrupted education, early marriages, pregnancies, social stigma, and persistent mental health issues. |
Reproductive Health Consequences: GBV resulted in unintended pregnancies, unsafe abortions, and increased risk of sexually transmitted diseases (STIs) like HIV/AIDS.
Family Breakdown: The rise in GBV led to family breakups as women fled abusive relationships. Marriages were strained due to increased financial stress.
Transactional Sex for Survival: Desperate for basic needs due to job losses and economic hardship, some women and girls resorted to transactional sex, exposing them to further health risks and exploitation.
One study participant stated, “The time of COVID-19 was so terrible for some of us. We in fact got a lot of diseases from it because you would want to get food and didn’t have money. That way you would be forced to get a man who would use you and pay.” – (FGD_Girls_19–24years_Kinawataka).
Economic Effects: COVID-19 restrictions caused job losses and limited economic opportunities, particularly for women in the informal sector. This increased financial dependence on abusers and trapped women in violent situations.
Limited Access to Employment: School closures and increased household chores limited women’s ability to seek employment, perpetuating gender inequality in the workforce. Some faced sexual harassment from potential employers.
Psychological Effects: Survivors of GBV experienced guilt, shame, anxiety, fear, and even suicidal thoughts due to the constant threat and unpredictability of abuse.
Post-COVID Effects: GBV survivors faced long-term consequences, including disrupted education, early marriage, early pregnancy, social stigma, and persistent mental health issues.
Lessons learned
The pandemic highlighted the need for accessible and comprehensive support services for survivors of GBV, the significance of schools as safe spaces for girls, and the need to prioritize their well-being during crises. Economic empowerment emerged as a significant protective factor for women and girls. Those with greater economic independence were better equipped to leave abusive environments and secure their safety and well-being, while dependent ones suffered abuses. Engaging men and boys as allies in the fight against GBV and involving them in prevention efforts can help promote positive behavior change and foster more equitable relationships.
Recommendations
To address GBV against women and girls, the researchers recommend the following moving forward;
- There is need to integrate technology-driven solutions like SafeBangle into national GBV prevention and response strategies. SafeBangle can be a valuable tool for policymakers as cases of violence that would have gone unreported will be brought to light and the would-be victims will be able to get immediate help from trusted relatives and friends.
- Provide economic opportunities and vocational training for women and girls to enhance their financial independence and reduce vulnerability to violence. There is therefore a need to introduce education and training programs that empower women and girls, by providing them with skills, resources, and opportunities to start their own ventures and to participate fully in community affairs.
- Strengthen and enforce existing laws and policies related to GBV, including laws against domestic violence, child marriage, and sexual assault without discrimination be it for law enforcers, leaders, and employers where such cases were suffocated. Ensure that perpetrators are held accountable through swift and fair legal processes that have no room for corruption.
- Establish and promote effective, accessible, and confidential reporting mechanisms for GBV incidents that provide confidence and can be trusted by survivors to enhance reporting of such incidences of GBV. Community Engagement and Involvement: Involve community leaders, religious leaders, and elders in discussions about GBV to promote gender equality, change social norms, and reinforce the message that violence against women and girls is unacceptable.
- Launch extensive public awareness campaigns to challenge harmful gender norms, report cases of GBV, raise awareness about the consequences of GBV, and promote positive behaviors and attitudes towards women and girls.
- Implement comprehensive sexuality education in schools and communities, educating young people about healthy relationships, consent, and reproductive rights to be able to make informed decisions about their own lives and well-being.
- Engage men and boys as allies in the fight against GBV, encouraging them to challenge harmful masculinity norms and behaviors. This will help minimize GBV because mostly they are the perpetrators. Strengthening Support for Survivors: Provide ongoing support and follow-up services for survivors of GBV mostly counselling services to aid their recovery and facilitate their reintegration into society.
- Provide ongoing support and follow-up services for survivors of GBV, mostly counseling services to aid their recovery and facilitate their reintegration into society.
- Provide avenues to seek free or subsidized services by survivors of GBV medical services and legal processes by survivors of GBV to enhance reporting of GBV cases, access to medical care, counseling, legal support, and other essential services.
- Encourage and support more research and innovations like SafeBangle to curb incidents of GBV.
- A comprehensive and inclusive approach is required. The efforts should involve government institutions, civil society organizations, community leaders, and individuals working together to address the root causes and provide support to survivors.
- Involve media in GBV prevention activities and for enhancing campaigns against GBV mostly on radio and TV.
MORE ABOUT THE STUDY
The core project team, included researchers at Makerere University School of Public Health (MakSPH), Medical College of Wisconsin (MCW) led by Prof. Julia Dickson-Gomez, SafeBangle Technologies, and Somero Uganda, a community-focused NGO, began the project by designing their research protocol and taking a CITI Program course on human subjects social/behavioral research. Team members also met with the Ministry of Gender, Labour, and Social Development (MGLSG) in support of the gender-based violence policy process, Ministry of Health and local government. They also established relationships with the Kampala Capital City Authority (KCCA) and Nakawa and Kawempe probation offices to support legal processes for the GBV survivors. SafeBangle Team also received an award from Defenders Protection Initiative.
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