engleski

Ethical and legal considerations in obtaining, sharing and reusing data from human participants

It is now beyond question that opening up access to scholarly knowledge is a key value of the academy in the 21st century. The Open Science paradigm however is not only restricted to facilitating democratic access to knowledge but also accommodates a set of key values of present-day knowledge creation such as fairness, transparency, equality and increased rigour and accountability in scholarly activities. Open Science therefore involves a cultural shift in the science ecosystem where research workflows are made transparent and subject to greater scrutiny from the early stages of protocols and planning through publication and data sharing. This is especially the case in research projects involving humans participants as subjects. Privacy and confidentiality become key ethical questions when research data is based on humans. For that reason, modern researchers are facing a complex set of legal issues and ethical dilemmas whenever they want to store, use, publish and share data collected from human participants. On the top of such dilemmas, researchers are also challenged by the perceived confrontations between the open research culture and the proliferation of ethical review procedures and legal requirements for data protection. In our workshop, we are aiming to address such challenges and deliver targeted advocacy for arts and humanities scholars working with data obtained from human participants. Making good use of the knowledge base and previous work that have been carried out in DARIAH’s Ethics and Legality in Digital Arts and Humanities (ELDAH) Working group, we will recommend concrete steps that should be taken in order to secure ethically responsible research and present several guidelines and regulations that exist on issues related to informed consent and confidentiality.

: Open licensing, Research ethics, GDPR, Legal issues, Data from human participants, Humanities data, Consent forms, ELDAH

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