Ethical Considerations for Health Research Data Governance

Abstract

Research involving humans often generates considerable data irrespective of the context in which the research is being conducted. This data must be protected from unauthorized access, use, and sharing as a means of safe-guarding research participants’ rights. Notwithstanding the fact that several jurisdictions globally have promulgated laws and regulations aimed at protecting individual citizens’ personal information, violation of privacy and related rights occurs in some instances. This could partly relate to a general lack of health research sector specific data governance policies and laws, which include data transfer agreements prevalent in most countries. The chapter therefore aims to cover the ethical aspects of health research data access, use, and sharing as a means of enabling health research institutions and policymakers to develop robust data governance structures and procedures. The scope of the chapter covers health research data generated in empirical research as well as that which is produced within a medical laboratory research context, i.e., human sample associated data.