Legal Aspects and Ethical Considerations in the Disease Registry: A Scoping Review

Abstract

Collecting accurate data in registries enables the governments to prevent dangerous diseases. However, concerns regarding disclosure have increased due to government involvement. The purpose of the present study was to investigate the legal and ethical aspects of the disease registry including the key elements of confidentiality in disease registry, privacy impact assessment, actions to preserve confidentiality, data ownership, and the consent of participants. This was a scoping review, collecting information through a search in Scopus, PubMed, Web of Science, and Google Scholar databases without time limitation. The findings declare that people's sureness in the confidentiality of information increases the information offered to the registry, and consequently, analysis of this information will improve people's health. Therefore, it is necessary to develop requirements for the use, analysis, sharing, and protection of registry data.

Keywords

• Legal Aspects
• Ethics
• Registries
• Disease