Informed Consent in Digital Data Management [BOOK CHAPTER]

Informed Consent in Digital Data Management [BOOK CHAPTER]
Elisabeth Hildt, Kelly Laas
Codes of Ethics and Ethical Guidelines, 1 January 2022; pp 55-81 [Springer]
Abstract
This article discusses the role of informed consent, a well-known concept and standard established in the field of medicine, in ethics codes relating to digital data management. It analyzes the significance allotted to informed consent and informed consent-related principles in ethics codes, policies, and guidelines by presenting the results of a study focused on 31 ethics codes, policies, and guidelines held as part of the Ethics Codes Collection. The analysis reveals that up to now, there is a limited number of codes of ethics, policies, and guidelines on digital data management. Informed consent often is a central component in these codes and guidelines. While there undoubtedly are significant similarities between informed consent in medicine and digital data management, in ethics codes and guidelines, informed consent-related standards in some fields such as marketing are weaker and less strict. The article concludes that informed consent is an essential standard in digital data management that can help effectively shape future practices in the field. However, a more detailed reflection on the specific content and role of informed consent and informed consent-related standards in the various areas of digital data management is needed to avoid the weakening and dilution of standards in contexts where there are no clear legal regulations.

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