Conference article

Research Ethics in Health Informatics – Why Bother?

Gunnar Hartvigsen
Department of Computer Science, University of Tromsø – The Arctic University of Norway, Tromsø, Norway

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Published in: Proceedings from The 14th Scandinavian Conference on Health Informatics 2016, Gothenburg, Sweden, April 6-7 2016

Linköping Electronic Conference Proceedings 122:10, p. 63-69

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Published: 2016-03-31

ISBN: 978-91-7685-776-2

ISSN: 1650-3686 (print), 1650-3740 (online)

Abstract

Research ethics is an obvious part of every researcher’s life. For some areas like health informatics, the multidisciplinarity and interdisciplinarity of the field makes it necessary to pay attention to ethical guidelines, acts/laws, and principles from both medicine and health science, science and technology, and social sciences and humanities. If you know where to look and what to look for, it is easy to find relevant information about research ethics. However, studies have indicated that we cannot take this knowledge for granted. If you do clinical trials, you have to apply to the Regional Committees for Medical and Health Research Ethics (REK) for approval. If you do studies with patients that do not imply any treatment or improvement of medical procedures, i.e., are not covered by the Health Research Act, you need to contact the “personvernombudet” (patient data protection ombud/officer) to get approval for involving patients. But for many research projects in health informatics, these kinds of approvals are not necessary. Some PhD students take part in large project with an existing approval by REK. This means that they probably have not been involved in writing the research protocol and applying for REK approval. As a consequence, the do not know this process very well. For most researchers, ethical guidelines are not something they have good knowledge of. A small inquiry among PhD students in science and technology at the University of Tromsø – The Arctic University of Norway, showed that ethical guidelines were vaguely known. This paper gives an overview of what kind of ethical guidelines, acts and ethical principles a researcher in a multiand interdisciplinary field as health informatics needs to know and pay attention to. Norwegian laws and regulations ae used to illustrate what kind of information that is needed .

Keywords

ethical guidelines, research ethics, health informatics.

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