A Scoping Overview of Global Legislation on Data Privacy and Protection: What are the Implications for Data Use, Transfer, and Sharing in E-Health Research?

Integration of digital technologies into health-care is positively impacting health outcomes globally. Consequently, creating need for regulation to ensure proper usage and transfer of data in digital platforms, while promoting its protection and privacy of data subjects. This scoping review investigates state of data privacy and protection legislation globally and analyses its impact on eHealth research. The review examines various legislations in terms of coverage, strengths, weaknesses and recommendations in the context of biomedical research. It employs a methodological framework based on PRISMA-ScR checklist. Results indicate lack of harmonized data protection laws and robust data governance frameworks. There are limited safeguards to ensure security and ethical use of digital data in e-health research. There is also lack of clear legislation regarding the classification of encrypted data, and the need to simplify legal language to prevent non-compliance. Issues like, defining data subjects’ rights to opt out of data processing, establishing a consential age for data use, and protecting children’s data are inadequate in some legislations. There is also limited regulatory oversight, and insecure data transfer methods. Recommendations emphasize the need to encourage global enhancement of privacy standards and to treat data protection as a fundamental human right. Enhanced data subject privacy will foster scientific collaboration. Enforceable data subject rights and responsibilities for data processors that extend beyond territorial boundaries are recommended. Balancing privacy and data subject rights with advancing digital health research is the way forward. Unified bilateral or multilateral agreements to enhance data protection laws will ensure cohesive data governance.