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Working with research data is a responsible task. This is particularly true for social, behavioral, educational, and economic sciences, where people are often the subject of research and thus sensitive, personal data form the core of research. In this context, various ethical principles can come into conflict, where the goal of openness and transparency in the research process may contradict the protection of research subjects. Institutions and professional societies have therefore developed guidelines to safeguard good scientific practice, which include ethical principles. Legal requirements, such as data protection or copyright laws, also serve to regulate the handling of research data at EU, national, or regional level.
Adhering good research data management practices can help you consider important ethical and legal aspects throughout all phases of the data curation lifecycle, from planning to archiving and reuse stage.
This article provides an overview of the key ethical topics of data management. The content related to legal aspects is associated with each individual process step.
Ethical considerations are relevant throughout the whole data curation lifecycle, including data collection and processing, storage and deletion of data, archiving, and reuse phases. Misuse and unethical use of data can occur at any stage of the data curation lifecycle. Some examples of the unethical use and data misuse are the following:
Therefore, it is important to incorporate research ethics considerations into the research proposal and when writing a Data Management Plan (DMP). This helps prevent data misuse and unethical use of data and promotes responsible handling of research data.
To counteract the misuse of research data and establish ethical research principles, organizations such as the DFG (German Research Foundation) have formulated principles of good scientific practice:
In relation to research, the DFG provides the Guidelines for Safeguarding Good Scientific Practice. Here is an excerpt from the section on Legal and Ethical Framework, Usage Rights (Guideline 10):
The consideration of ethical issues is particularly important for the social, educational, and behavioral sciences, as disciplines which often work with sensitive personal data. In addition to the ethical conduct of researchers within the scientific community, the protection of research subjects (the ‘researched individuals’) is vital.
Ethical and legal principles towards the researched individuals:
Ethical and legal principles towards the scientific community and fellow researchers:
When is research subject to review? What are the ethical guideline requirements across different disciplines? Where can I find suitable tools and checklists for an ethical handling of my research data? With this Collection of Best Practices the German Data Forum (RatSWD) provides information on the topic of research ethics and answers to these questions for various user groups – such as researchers, educators, and members of ethics committees – from different disciplines.
An important aspect of good research data management (RDM) is understanding the sensitivity of certain data. It has to be ensured that appropriate measures are taken in the data curation process to ensure their adequate protection. This is particularly relevant in the fields of social sciences, education, and behavioral sciences, where personal data or data that could be linked to individuals are often processed.
To regulate the processing of personal data, the European Union has had the General Data Protection Regulation (GDPR) since 2016. Article 4 of the GDPR defines personal data as “any information relating to an identified or identifiable natural person.” Particularly sensitive personal data is further highlighted in Article 9, which includes, among other types of information:
The processing of these sensitive data is generally prohibited under the GDPR, unless the data subjects explicitly consent to it, or another law permits it. For this reason, it is particularly important that these conditions, such as the presence of valid informed consent, be considered from the outset in the RDM process when working with this type of data.
To ensure the ethically and legally sound publication, archiving, and secondary use of data, several conditions should be met, including:
Even if all these conditions are met, not all data can be published. In this case, still, it should be ensured that at least the Metadata is openly accessible – because even if a dataset cannot be released for reuse, this information and its findability can still be of great value for research.
You will find a comprehensive overview on the subject of personal data in the Data Privacy Handbook of the University of Utrecht. There you can learn more about the GDPR, risk assessments, storage & publication and techniques & tools in relation to personal data.