Ethical Implications of Open Access Repository for Health Research Data

The growth of institutional repositories to hold locally produced research products such as reports, publications, data sets or even tissue banks, is growing globally. They offer the potential to make research information available quickly, widely and facilitate interaction between researchers. They also provide very real opportunities for data sharing and secondary research. Objectives: This paper interrogates the arguments for and against holding dental research data in open access repositories and provides a conceptual framework to guide future policy and practice in this area. Method: A conceptual framework is used to determine whether the inclusion of dental health research data in particular, poses a substantial ethical challenge because of the often personal and private nature of the information. It addresses concerns around informed consent, data ownership, protection of identity and appropriate data management and protection protocols, all of which raise particular ethical questions. These variously impact on the research participant's autonomy, the balance of risk and benefit to which they may be exposed, the social justice attached to certain research topics and rights to access or “own”, or even possibly sell the data. The importance of addressing each of these ethical challenges is fundamental to the future success of research using dental research data held in institutional repositories. Results: Clear policy guidelines for the storage, sorting and access control for such data are required, along with adequate funding and appropriate software tools to manage and protect the data sets. Conclusion: With the right technology and clear ethical guidelines, the success of such repositories is assured and research will reap enormous benefits for dental health research.