The ethics and editorial challenges of internet-based research

Stephanie Harriman ,Jigisha Patel

doi:10.1186/preaccept-1753356481135356

Abstract

The internet has opened up vast possibilities for research. An increasing number of studies are being conducted using the internet as both a source of data and a venue for research. Use of the internet in research has created many challenges, not just for those conducting and reviewing the studies, but also for editors publishing this work. Two key issues raised by internet-based research are ethics approval and informed consent. While some guidance exists regarding the ethics and consent of internet-based research, and some institutions provide their own guidelines, there appears to be a lack of definitive national standards. We discuss the issues surrounding ethics and consent for internet-based research and the need for a consensus on how to address these issues to ensure consistency.

Highlights

Facebook is a well-known online social networking site that, by the end of 2013, was reported to have 1.23 billion users worldwide [1]
The possibilities offered by the internet bring with them many challenges, including verification of participant identity, follow-up and support of participants, ethics approval, informed consent and support of vulnerable groups. In this editorial we focus on what we see as the two main issues for editors – ethics and informed consent
Who is responsible for ethics approval of internet-based research? Journals require that research involving human subjects, their data or material must have been performed in accordance with the Declaration of Helsinki and approved by an appropriate ethics committee

Summary

Background

Facebook is a well-known online social networking site that, by the end of 2013, was reported to have 1.23 billion users worldwide [1]. Journals require that research involving human subjects, their data or material must have been performed in accordance with the Declaration of Helsinki and approved by an appropriate ethics committee The Facebook study states that, as all users agree to their Data Use Policy prior to creating an account, they have given informed consent to participate in this research [3]. The need for policy on internet-based research In light of the issues that we have experienced, and the apparent lack of definitive guidance, earlier this year we contacted the chairs of National Health Service (NHS) ethics committees (equivalent to institutional review boards (IRB) in the USA) in the UK to ask how they review proposals for internet-based research.

Conclusions

Kiss J

University of Bedfordshire