Unmasking the Ethical Dimensions of Data-sharing in Health Research: Perspectives from Researchers at a Public University in Uganda.

Background: In resource-limited settings like Uganda, ethical sharing of health research data is crucial for advancing scientific knowledge. Despite the growing trend of data sharing in the digital age, its adoption in low-resource contexts is often hampered by complex ethical considerations. This report investigates these ethical concerns using data from researchers at a public university, with the goal of informing the development of practical solutions to promote ethical data-sharing practices in Uganda.

A qualitative study on informed consent decision-making at two tertiary hospitals in Uganda: Experiences of patients undergoing emergency surgery and their next of kin.

Background: In emergency situations, patients and their next of kin must make complex medical and ethical decisions in a quick and timely way.

Objectives: To describe the decision-making process during informed consent for emergency surgery among patients and the next of kin of patients who have undergone emergency surgery.

Methods: Consecutive sampling of 39 participants and in-depth semi-structured interviews were conducted at two tertiary teaching hospitals in Uganda.

A comparison of oral bacteriome isolated from periodontal pockets of participants with or without diabetes mellitus in Uganda: a case control study.

Objective: Diabetes mellitus predisposes patients to increased incidence and severe forms of periodontal disease. Currently, information on the bacterial diversity of patients with diabetes mellitus and periodontitis in Uganda is scanty. This study set out to describe the bacteria associated with periodontitis in patients with diabetes mellitus in Uganda, as part of a larger study describing the association between periodontal disease and diabetes mellitus.

Informed consent in cancer clinical care: Perspectives of healthcare professionals on information disclosure at a tertiary institution in Uganda.

Introduction: While there have been several studies examining the understanding and quality of informed consent in clinical trials of cancer therapies, there is limited empirical research on health practitioners' experiences on the informed consent process in cancer care, especially from low resource settings. This study explored health professionals' perspectives on information disclosure during the consenting process in cancer care.

Methods: A qualitative descriptive approach was used to collect data.

The role of community engagement in promoting research participants' understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment.

Community engagement (CE) is praised to be a powerful vehicle in empowering communities with knowledge and skills to make informed decisions for better health care. Several CE approaches have been proposed to improve participants' and research communities' understanding of genomic research including pharmacogenomic information and results. However, there is limited literature on how these approaches can be used to communicate findings of pharmacogenomic research to communities of people living with HIV.

Quality of life of patients with traumatic spinal cord injuries: a cross-sectional study at a tertiary hospital in Uganda.

Background: The study aimed to assess the perceived quality of life of patients with traumatic spinal cord injuries.

Methodology: This was a cross sectional study conducted in the Spine Unit of a tertiary hospital in Uganda. The study population comprised of patients with spinal cord injuries.

Data sharing practices in collaborative human genomic research in low- and middle-income countries: A systematic review protocol.

Introduction: The practice of creating large databases has become increasingly common by combining research participants' data into larger repositories. Funders now require that data sharing be considered in newly funded research project, unless there are justifiable reasons not to do so. Access to genomic data brings along a host of ethical concerns as well as fairness and equity in the conduct of collaborative research between researchers from high- income and low-and middle-income countries.

Periodontitis is associated with insulin resistance in adults living with diabetes mellitus in Uganda: a cross- sectional study.

Introduction: Evidence suggests that majority of patients with diabetes mellitus in Uganda have poor glycaemic control as well as periodontal disease. This study set out to determine the association between periodontitis and insulin resistance in adult patients with diabetes mellitus in Uganda using the triglyceride glucose index.

Methods: Two hundred and twenty-three adult study participants with confirmed diabetes mellitus were enrolled in a cross-sectional study.

A case for routine microbial diagnostics: Results from antimicrobial susceptibility testing in post-traumatic wound infections at a Ugandan tertiary care hospital.

The global spread of antimicrobial resistance (AMR) poses an increasing challenge for clinicians in Uganda, where microbiological diagnostics are not routinely available or accessible. The aim of this study was to determine pathogen prevalence and antibiotic resistance patterns in patients with wound infections following trauma at a national referral hospital in Kampala, Uganda. In addition, the suitability of currently used empirical treatment options in this setting was evaluated.

Attitudes and usage of visual-aids in graduate student learning of gross anatomy at Makerere University.

Background: The increasing numbers of students studying human anatomy at Makerere University are beginning to overwhelm available resources, which presents challenges in learning and necessitates an evaluation of alternative ways to enhance anatomy learning.The increasing numbers of students overwhelm resources available and presents challenges in learning. This necessitates an evaluation of alternatives to enhance gross anatomy learning at Makerere University College of Health Sciences.

Health-related quality of life in patients with low back pain in a low resource setting: a cross-sectional study at a tertiary hospital in Uganda.

Background: Low back pain is the leading global cause of years lost to disability. The study aimed to assess the health-related quality of life in patients with low back pain attending an outpatient clinic at a national referral hospital in Uganda.

Methods: This was a hospital based cross-sectional study that involved 250 adult patients with low back pain.

An open-source digital contact tracing system tailored to haulage.

Digital contact tracing presents numerous advantages compared to manual contact tracing methods, especially in terms of enhanced speed and automation. Nevertheless, a lack of comprehensive evaluation regarding functionality, efficiency, benefits, and acceptance within communities remains. Here we primarily focus on the functionality of THEA-GS, an open-source digital contact tracing tool developed through consultation with stakeholders.

Experiences of patients and next of kin on informed consent process for emergency surgery in two Urban university teaching hospitals in Uganda: a comparative cross sectional study.

Unlabelled: Informed consent for emergency surgery is a process in which a patient or their next of kin must make quick decisions required for surgery in a life-threatening situation or surgery that may have life-altering outcomes. The objective of the study was to describe patients and their next of kin experiences and factors influencing the informed consent process in two urban university teaching hospitals in Uganda.

Methods: A cross-sectional survey involving patients who underwent emergency surgery and their next of kin was conducted in two tertiary care hospitals; one public and one private-not-for profit institution.

Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.

Little is known about whether people living with HIV would like to receive their results from pharmacogenomics research. This study explored the factors influencing participants' preferences and the reasons for their desire to receive individual results from pharmacogenomics research. We employed a convergent parallel mixed methods study design comprising a survey of 225 research participants and 5 deliberative focus group discussions with 30 purposively selected research participants.

Informed consent process for emergency surgery: A scoping review of stakeholders' perspectives, challenges, ethical concepts, and policies.

Background: A scoping review of literature about the informed consent process for emergency surgery from the perspectives of the patients, next of kin, emergency staff, and available guiding policies.

Objectives: To provide an overview of the informed consent process for emergency surgery; the challenges that arise from the perspectives of the patients, emergency staff, and next of kin; policies that guide informed consent for emergency surgery; and to identify any knowledge gaps that could guide further inquiry in this area.

Methods: We searched Google Scholar, PubMed/MEDLINE databases as well as Sheridan Libraries and Welch Medical Library from 1990 to 2021.

Genetic and Genomic Researchers' Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study.

Numerous ethical, legal, and social issues arise with biological sample sharing. The study explored the perspectives of genetic and genomic researchers on the sharing of biological samples in international collaborative research. Qualitative in-depth interviews were conducted with 15 researchers.

Evaluation of the current status of prosthetic rehabilitation services for major limb loss: a descriptive study in Ugandan Referral hospitals.

Purpose: Low-and-middle-income countries (LMICs) have a large burden of major limb loss. No recent study has reported on Uganda's state of public sector prosthetics services. This study aimed to document the landscape of major limb loss, and the structure of available prosthetics services in Uganda.

Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities.

In July 2020, the H3Africa Ethics and Community Engagement (E&CE) Working Group organised a webinar with ethics committee members and biomedical researchers from various African institutions throughout the Continent to discuss the issue of whether and how biological samples for scientific research may be accessed by commercial entities when broad consents obtained for the samples are silent. 128 people including Research Ethics Committee members (10), H3Africa researchers (46) including members of the E&CE working group, biomedical researchers not associated with H3Africa (27), representatives from the National Institutes of Health (16) and 10 other participants attended the webinar and shared their views. Several major themes emerged during the webinar, with the topics of broad versus explicit informed consent, defining commercial use, legacy samples and benefit sharing prevailing in the discussion.

Developing digital contact tracing tailored to haulage in East Africa to support COVID-19 surveillance: a protocol.

Introduction: At the peak of Uganda's first wave of SARS-CoV-2 in May 2020, one in three COVID-19 cases was linked to the haulage sector. This triggered a mandatory requirement for a negative PCR test result at all ports of entry and exit, resulting in significant delays as haulage drivers had to wait for 24-48 hours for results, which severely crippled the regional supply chain.To support public health and economic recovery, we aim to develop and test a mobile phone-based digital contact tracing (DCT) tool that both augments conventional contact tracing and also increases its speed and efficiency.

Remote consent approaches for mobile phone surveys of non-communicable disease risk factors in Colombia and Uganda: A randomized study.

Introduction: Automated mobile phone surveys (MPS) can be used to collect public health data of various types to inform health policy and programs globally. One challenge in administering MPS is identification of an appropriate and effective participant consent process. This study investigated the impact of different survey consent approaches on participant disposition (response characteristics and understanding of the purpose of the survey) within the context of an MPS that measured noncommunicable disease (NCD) risk factors across Colombia and Uganda.

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members.

Genomic and biobanking research has increased in Africa over the past few years. This has raised pertinent ethical, legal, and societal concerns for stakeholders such as sample or data ownership, commercialization, and benefit sharing. There is limited awareness of the concept of benefit sharing by stakeholders in sub-Saharan Africa.

Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.

This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants' understanding and challenges faced during the consenting process.

Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.

Background: There is a plethora of unanswered ethical questions about sharing incidental findings in genetics and genomics research. Yet understanding and addressing such issues is necessary for communicating incidental findings with participants. We explored researchers' perspectives and experiences regarding feedback of incidental genomics findings to participants.

The lived experience of people with upper limb absence living in Uganda: A qualitative study.

Background: The impact of upper limb absence on people's lived experiences is understudied, particularly in African countries, with implications for policy and service design.

Objectives: The objective of this study was to explore the lived experiences of people with upper limb absence (PWULA) living in Uganda.

Method: Informed by preliminary work, we designed a qualitative study employing semi-structured interviews to understand the experience of living with upper limb absence in Uganda.

Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda.

Several studies have reported inadequate comprehension of informed consent for genomic research. This study aimed to assess research participants' understanding of critical elements of informed consent for genomic research. A cross-sectional survey involving 123 parents/caregivers of children participating in a paediatric genomic TB/HIV study was conducted Only 47.