Artificial intelligence and medical research databases: ethical review by data access committees

Journal article

BackgroundSeveral 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 methodsWe 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.ResultsThree 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.ConclusionsOur 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

Authors: McKay, F; Williams, BJ; Prestwich, G; Bansal, D; Treanor, D

• Publication status: Published
• Peer review status: Peer reviewed
• Publisher: BioMed Central
• Journal: BMC Medical Ethics
• Volume: 24
• Issue: 1
• Pages: 49-49
• Article number: 49
• Publication date: 2023-07-08
• DOI: 10.1186/s12910-023-00927-8
• EISSN: 1472-6939
• ISSN: 1472-6939
• Language: English
• Keywords: Corporate governance; Political science; Business; Computer science; Data governance; Data sharing; Big data; Data quality; Medicine; Strengths and weaknesses; Research ethics; Function (biology); Alternative medicine; Engineering; Public relations; Psychology; Philosophy of medicine; Engineering ethics; Novelty; Knowledge management