Speaker
Description
The convergence among researchers on the value of data sharing continues to grow yet little data sharing occurs. Several studies exist to understand motivations, perceptions, practices and barriers to research data sharing with seemingly similar findings. One of the key barriers to data sharing is privacy concerns. Not all data can be made publicly accessible. Research data should be made ‘as open as possible, as closed as necessary’. In some instances, data commercial concerns continue to grow especially from industry funded research. Some researchers still perceive data as private thus should be closely kept. Concurrently, some researchers lack knowledge and skills to develop data management plans that contribute to their data sharing desires. As a result, data sharing clauses, processing procedures and privacy statements are missing in informed consent statements. This not only suffocates data sharing efforts but raises potential legal challenges. Though in some disciplines such as biomedicine, data sharing has become a standard research practice, data sharing is not yet common in some communities such as humanities. This paper is based on a narrative literature review of university data management policies, guidelines and publications. The review focused on privacy, confidentiality and security concerns in research data sharing. To address privacy concerns in data sharing, the paper suggests a combination of 1) data management plans (DMP) 2) obtaining informed consent 3) anonymization and 4) data access controls. Data sharing begins with a sound DMP. A DMP gives the researcher an opportunity to ‘walk through’ the research before it begins. The researcher defines required privacy, security, and sharing beforehand, therefore contributes to data sharing planning. Further, researchers can attain ethical and legal data sharing by obtaining consent, anonymizing data and providing clarity to data copyrights and access controls. The paper contributes to knowledge on data sharing by providing practical suggestions and tips to handling privacy concerns in data sharing. The paper highlights essential requirements that researchers must satisfy to ethically and legally share research data. However, a focus on personal data in a general context is the paper’s major limitation. Future research must focus on a specific discipline because data sharing concerns are contextual.
Keywords: data sharing, privacy, informed consent, data management plan, data access.
