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

Kaawa-Mafigiri, David; Ekusai-Sebatta, Deborah; Munabi, Ian Guyton; Mwaka, Erisa

doi:10.1177/15562646231171289

Cited by 5 publications

(2 citation statements)

References 61 publications

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“…One interviewee, in particular, emphasised the importance of regulation to foster meaningful knowledge co-creation, whereby local African researchers are equally involved in research collaborations and fairly acknowledged in resulting outputs. This finding concurs with other studies suggesting that most LMICs lack robust regulatory and governance structures [ 17 , 52 – 55 ]. Such insufficiencies in catering to the lawful and safe sharing or cross-border transferring of data caused some interviewees to experience first-hand consequences of neo-colonial science, also known as helicopter research, through exploitative research practices.…”

Section: Discussionsupporting

confidence: 93%

Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa

Cengiz,

Kabanda,

Moodley

2024

PLoS ONE

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Background Several factors thwart successful data sharing—ambiguous or fragmented regulatory landscapes, conflicting institutional/researcher interests and varying levels of data science-related expertise are among these. Traditional ethics oversight mechanisms and practices may not be well placed to guarantee adequate research oversight given the unique challenges presented by digital technologies and artificial intelligence (AI). Data-intensive research has raised new, contextual ethics and legal challenges that are particularly relevant in an African research setting. Yet, no empirical research has been conducted to explore these challenges. Materials and methods We explored REC members’ views and experiences on data sharing by conducting 20 semi-structured interviews online between June 2022 and February 2023. Using purposive sampling and snowballing, we recruited representatives across sub-Saharan Africa (SSA). We transcribed verbatim and thematically analysed the data with Atlas.ti V22. Results Three dominant themes were identified: (i) experiences in reviewing data sharing protocols, (ii) perceptions of data transfer tools and (iii) ethical, legal and social challenges of data sharing. Several sub-themes emerged as: (i.a) frequency of and approaches used in reviewing data sharing protocols, (i.b) practical/technical challenges, (i.c) training, (ii.a) ideal structure of data transfer tools, (ii.b) key elements of data transfer tools, (ii.c) implementation level, (ii.d) key stakeholders in developing and reviewing a data transfer agreement (DTA), (iii.a) confidentiality and anonymity, (iii.b) consent, (iii.c) regulatory frameworks, and (iii.d) stigmatisation and discrimination. Conclusions Our results indicated variability in REC members’ perceptions, suboptimal awareness of the existence of data protection laws and a unanimously expressed need for REC member training. To promote efficient data sharing within and across SSA, guidelines that incorporate ethical, legal and social elements need to be developed in consultation with relevant stakeholders and field experts, along with the training accreditation of REC members in the review of data-intensive protocols.

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Section: Discussionsupporting

confidence: 93%

Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa

Cengiz,

Kabanda,

Moodley

2024

PLoS ONE

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“…In the qualitative analysis, all documents that meet the inclusion criteria will be imported into NVivo 14 for analysis [ 22 ]. A code book will be created [ 46 ]. The codes will be organized and categorized based on published and non-published documents.…”

Section: Methodsmentioning

confidence: 99%

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

Ekusai-Sebatta,

Ocan,

Singh

et al. 2023

PLoS ONE

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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. Materials and methods This systematic review protocol will be developed in line with PRISMA -guidelines which refers to Open Science Framework, registered in PROSPERO (https://www.crd.york.ac.uk/prospero/) record CRD42022297984 and published in a peer reviewed journal. Data sources will include PubMed, google scholar, EMBASE, Web of science and MEDLINE. Both published and grey literature will be searched. Subject matter experts including bioethicists, principal investigators of genomic research projects and research administrators will be contacted. After de-duplication, titles and abstracts will be screened for eligibility. Data extraction will be undertaken using a piloted form designed in EPPI-Reviewer software before conducting risk of bias assessments by a pair of reviewers, acting independently. Any discrepancies will be resolved by consensus. Analysis will be done using a structured narrative synthesis and where feasible metanalysis. This review will attempt to highlight the context of data sharing practices in the global North-South and South-South collaborative human genomic research in low- and middle-income countries. This review will enhance the body of evidence on ethical, legal and social implications of data sharing in international collaborative genomic research setting criteria for data sharing. The full report will be shared with relevant stakeholders including universities, civil society, funders, and departments of genomic research to ensure an adequate reach in low-and middle-income countries (LMICs).

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The PHA4GE Microbial Data-Sharing Accord: establishing baseline consensus microbial data-sharing norms to facilitate cross-sectoral collaboration

Griffiths,

van Heusden,

Tamuhla

et al. 2024

BMJ Glob Health

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Microbial data sharing underlies evidence-based microbial research, as well as pathogen surveillance and analysis essential to public health. While the need for data sharing was highlighted during the SARS-CoV-2 pandemic, some concerns regarding secondary data use have also surfaced. Although general guidelines are available for data sharing, we note the absence of a set of established, universal, unambiguous and accessible principles to guide the secondary use of microbial data. Here, we propose the Public Health Alliance for Genomic Epidemiology (PHA4GE) Microbial Data-Sharing Accord to consolidate consensus norms and accepted practices for the secondary use of microbial data. The Accord provides a set of seven simple, baseline principles to address key concerns that may arise for researchers providing microbial datasets for secondary use and to guide responsible use by data users. By providing clear rules for secondary use of microbial data, the Accord can increase confidence in sharing by data providers and protect against data mis-use during secondary analyses.

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

Cited by 5 publications

References 61 publications

Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa

Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa

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

The PHA4GE Microbial Data-Sharing Accord: establishing baseline consensus microbial data-sharing norms to facilitate cross-sectoral collaboration

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