University research ethics boards, although well established in North American since the 1980s, sometimes still have a poor reputation among researchers. They may be seen by members of the academic community as a bureaucratic system designed to prevent or slow down research, and one that does not understand the reality of researchers. This negative view is often the result of misunderstanding by 1) researchers and 2) some REBs about what an REB’s mandate is and how it should work. Based on (...) the experience of an REB President and a bioethicist, this series of Frequently Asked Questions aims to demystify research ethics so that researchers and REBs can collaborate in the advancement of knowledge, while ensuring the ethical and responsible conduct of research. (shrink)

Meeting appropriate ethical standards for research involving human participants, mean ensuring confidentiality. It is assumed that the research participant will accept the safeguarding protocols necessary to ensure confidentiality. This assumption however oversimplifies the variation of motivations that goes into participants’ decisions to participate in research. Drawing on reflections from my fieldwork experience in Ghana, I answer the questions: Why do research participants reject confidentiality? What ethical position can one take when the researcher and the researched have conflicting perspectives about confidentiality? (...) I contend that participants with personal stake refuse confidentiality when they want to be acknowledged for their data. Rejecting confidentiality is however, embedded in the individual perspective, cultural, and political context of the study area. The ethical concerns of such refusal can be ameliorated if confidentiality is nuanced to include six categorically distinct but mutually non-exclusive stages: research-planning, ongoing-information, writing-up, reality-after-research, differential-disseminations, and no-confidentiality-clause. The paper further argues that whilst maintaining institutional allegiance in this matter is crucial, employing confidentiality should lie at the intersection of participants’ motivation for taking part in the research, the socio-cultural-specific-context of the study location and the nature of the topic being explored. (shrink)

This paper reflects on the three main ethical challenges we faced when conducting digital ethnography in three autism Brazilian communities on Facebook: how to position oneself as a researcher, how...

International research collaborations engage multiple countries, researchers, and universities. This enhances the magnitude of contextual challenges, including legal and ethical dimensions across various jurisdictions, that must be bridged in qualitative research regardless of discipline, also in the construction of informed consents. From a Scandinavian perspective, this discussion paper explores challenges pertaining to the construction of informed consents related to EU data protection legislation, to which research institutions are subject when processing data related to EU residents. Next, it discusses challenges related (...) to different traditions in terms of handling informed consent and research participants’ integrity, including the possibilities to waive anonymity in research. In international, multidisciplinary studies where researchers also operate in relatively ‘unknown territory’, it is especially important to be aware of and reflect on (inter)national possibilities and limitations related to laws, ethics, and culture/traditions in societies and within the academic fields. The variations in laws, ethical guidelines, and traditions in different countries demand that researchers are up to date with laws and ethical guidelines in the studied countries. Their practical implementation in the countries at stake in international, collaborative research endeavours are important, especially since such regulations and guidelines are far from static and change over time. The implementation of good ethical research practice requires democratic, reflexive, and responsive processes in all phases of research. Especially the preparation phase functions as a period to increase and ensure the knowledge and legal/ethical competences of the entire research team to meet the demands in the countries at stake. (shrink)

Research related to indigenous peoples in Sweden and elsewhere has a history marked by discriminatory practice and unequal research processes. Sweden has still not been very visible in terms of openly debating, developing and implementing ethical strategies specifically suited for indigenous research. The present study explores how research ethics is discussed among scholars within the Sami research field in contemporary Sweden. Fifty-six research proposals deriving from eight different research institutions and 160 individual researchers are analyzed, discovering how scholars relate to (...) research ethics when planning for new research projects related to the indigenous Sami. The results demonstrate that ethical guidelines for research are often referred to, but that a common view on what guidelines to use is lacking, leading to a notable variety between different researchers. Ethical discussions are present in the vast majority of the proposals, however there are notable differences between the theories around how to proceed in a culturally safe, ethical manner, and the proposed methods that are to be used to implement theory in practice. In conclusion, there exists a great uncertainty among scholars on where to seek ethical guidance, how to relate to current legislation around research ethics and at the same time act ethically in a culturally appropriate manner. This uncertainty leads to questioning whether discussions of ethics are relevant in the first place, what they are supposed to include, how they are meant to be undertaken and what consequences can be expected from the presence or absence of ethics in indigenous research. (shrink)

Reviews of research and development collaborations with indigenous communities have exhibited numerous challenges related to researcher–community interactions. Based on many accounts of indiscretions, indigenous communities have begun generating conduct guidelines for researchers. However, the effectiveness of their chosen communication methods, guaranteeing appropriate behavior of the researchers, has not been established. This research contributes to an ongoing debate around appropriate ethical conduct of researchers in situ. The aim of this study was to investigate the interpretation accuracy of interaction guidelines produced in (...) the form of sketches by a Malaysian indigenous community. We provided eight interaction sketches to 57 students, in three continents, for interpretation and expression of their intended behavior. We found that most were unable to accurately interpret the sketches and describe intended behavioral responses. A major concern remains with the tendency to fall back on prior practices of “good” behavior, with minimal guidance on contextual practices. In an attempt to provide greater direction, we explored a speech bubble exercise with further 15 students. Our findings directly contribute to current efforts in formulating researcher–community interaction practices that should form the basis of ethical research in situ. (shrink)