DSpace: Utilizing Data Science to Predict and Improve Health Outcomes in Pediatric HIV

University Of Botswana, Gaborone

Investigators

Abstract

Abstract This administrative supplement to our U01HG114479 aims to support research to develop an evidence base that will inform future policy directions on the utilization of electronic health records (EHR) including linkage with potentially sensitive genomic data in pediatric research in Uganda and Botswana amidst a dynamic consent landscape. Therefore, this project is specific to bioethics research in pediatrics. Pediatric research is crucial for advancing healthcare but presents unique bioethical challenges due to children's evolving capacity for assent and evolving consent processes. Data science holds promise for improving child health outcomes in Africa but raises concerns regarding ethical considerations with pediatric EHR and genomic data linkage. This study aims to address two bioethical questions: 1) the ethical, legal, and policy (ELP) issues of using pediatric EHR data in research, and 2) the implications for consent and privacy when linking genomic data with EHR in pediatrics research. In Aim 1 semi-structured interviews with key stakeholders and document analysis will evaluate informed consent, data sharing practices, and vulnerabilities of children in Ugandan and Botswanan research using EHR data. We will assess ELP considerations for pre-existing EHR data use, including anonymization, governance, and secondary use ethics. In Aim 2 a discrete choice experiment survey will assess public and researcher preferences regarding consent and privacy issues when linking potentially sensitive genomic data with EHR in pediatric research. This study will provide evidence- based recommendations to address ELP challenges and navigate the ethical landscape of data linkage in African pediatric research. It will inform policymakers and researchers on promoting informed consent, robust data governance, and participant privacy in data-driven research. Ultimately, this project strengthens the bioethics research capacity for data science in Africa.