Table 1 Examples of topics covered, and guidance on informed consent for internet-based research from selected UK and US academic institutions
From: The ethics and editorial challenges of internet-based research
Institution | Topics covered in guidance |
|---|---|
University of Bedfordshire, UK | - Main focus on consent. |
http://www.beds.ac.uk/research/iasr/ethics/onlineresearch [[9]] | - Consent: Online information may be freely quoted and analysed without consent if it is officially, publicly archived, not password protected and not prohibited by the site’s policy. For everything else, consent is required. |
University of Brighton, UK http://about.brighton.ac.uk/hss/fregc/ [[10]] | - Covers privacy, anonymity, informed consent, potential harm or intrusion, access to participation and reliability of data. |
- Includes Association of Internet Researchers report. | |
- Consent: highlights difficulties of obtaining informed consent and suggests possible approaches including retrospective consent after data collection with withdrawal of data from those not consenting, or seeking advice from website owner/administrator on the most appropriate way to obtain consent. | |
University of Connecticut, USA http://irb.uconn.edu/internet_research.html [[11]] and Penn State, USA http://www.research.psu.edu/policies/research-protections/irb/irb-guideline-10 [[12]] | - Cover recruitment, data collection, server administration, data storage/disposal and informed consent. |
- States that protocols for internet-based research are reviewed using the same standards and considerations as all other research activities. | |
- Consent: Anonymous internet surveys may require only “I agree” or “I disagree” buttons, but IRB may require a written consent form to be mailed or faxed by participants. Researchers should not guarantee confidentiality or anonymity. | |
University of Cornell Office of Research Integrity and Assurance Institutional Review Board, USA http://www.irb.cornell.edu/faq/ [[13]] | - Focus on consent. |
- Consent: it may sometimes be appropriate to use implied informed consent for internet research, e.g. by completion of an online questionnaire. Participants should be informed that completion of questionnaire implies consent and should be shown consent information. In some cases an emailed “consent form” in lieu of a traditional paper informed consent form may be appropriate. |