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We refer to your letter of April 28th 2011 to the National Committee for Research Ethics in Science and Technology (NENT), and we sincerely regret the delay of our statement. In your letter, NENT is asked to review the Ethics Manual of the uTRUSTit project which defines the ethical code of conduct for research within the uTRUSTit project. More specifically, you ask NENT to answer to the following:
(1) Have we identified the important ethical issues?
(2) Is our approaches to deal with these issues adequate?
(3) Which other issues might arise and how can they be tackled?
NENT discussed the project during the meetings of May 3th and September 19th 2011. Overall, the committee finds that the Ethics Manual is a good framework for assessing and handling the ethical issues that might arise during the project. In Norway, the project will include people with special needs, i.e., visually impaired and dyslexic people. The participants are recruited through the user organizations, Norwegian Association for the Blind and Partially-Sighted and Dyslexia Norway. NENT believes that the involvement of the user organizations in the recruitment process to some extent serves as an ethical guarantee check of the project. However, there are certain research ethical challenges that the committee would like to comment on.
During the recruitment phase approximately 15 participants will be involved. In the second design iteration, another 15 participants will be included. Finally, approximately 20 participants will be involved. Small populations of research participants offer special challenges related to the obligation to respect confidentiality. The challenge pertains in particular to this project, since it involves people with disabilities, and hence the participants may be indirectly identifiable through their diagnosis. It is important that you consider how you best can secure the anonymity of the participants and the protection of privacy. A solution may be to remove information that can be traced to the individual participants in the final report. In order to honor the obligation to respect confidentiality, we also recommend that exact information should be given on when the data that will make it possible to identify individuals will be destroyed.
It may happen that you during the sessions obtain new sensitive information related to the health conditions of the participants. You should consider how you should deal with this information, if this occurs.
The research may involve a mild form of deception. It says in the Manual that “if the system functionality is not fully operative, a hidden evaluator may emulate the test (Wizard of Oz trials), without the user knowing” (page 16). A main aim of the project is to increase the user’s trust in technology, and the deception, even if mild, is problematic not the least in light of this aim. The committee finds that the method may be accepted, but emphasizes that the participants should be informed afterwards and also explained why they were not fully informed beforehand.
On the whole, it is important to give information in an appropriate form, as highlighted in the Ethical Manual. While the committee believes that it is a good idea to repeat the information, and give the participants the opportunity to ask questions, NENT recommends carefulness when you offer explanations “until the information is fully understood” (page 15), so you avoid that participants feel that this is an IQ-test.
Compensation to research participants raises complex questions related to the obligation to obtain free and informed consent, as well as methodological issues. The committee believes that the project itself, and in particular the debriefing session will in fact serve as a learning experience for participants, and thus that no compensation for participation is required (apart from transportation costs). A debriefing session after each session is not the least important as it offers participants an opportunity to deal with any problem that might arise as a result of their participation in the project. We advise that in addition to the sessions you already plan, you should also offer a debriefing session a while after the project is finished. This will give the participants an opportunity to deal with long term effects, if any.
Finally, NENT would like to receive an update if there are any substantial changes in the research design and/or new or unforeseen ethical issues arise.