Within this submission the authors share their experiences as a blended research team with Aboriginal community and mainstream academic researchers. The team has collaborated since 2004 on several externally funded research projects. Initially, the team engaged in research through mainstream methodologies. In the process, the community co-researchers and participants were silenced through mainstream cultural practices that were unfamiliar and meaningless in Wikwemikong culture. More recently, the team has employed a community conceived de-colonizing methodology, developed from within Wikwemikong Unceded Indian Reserve. (...) Within this submission, the authors will highlight their initial cultural missteps, followed by more recently utilized culturally relevant approaches. It is proposed that what might be ethically sound research with mainstream participants and among mainstream researchers can silence and subvert practices among those from marginalized groups/cultures. Provisional suggestions are offered for researchers interested in co-researching in Aboriginal communities. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (shrink)

This research ethics article focuses on an unexpected finding from my Master’s thesis examining bereaved participants’ experiences of taking part in sensitive qualitative research: some participants wanted their real names used in my written dissertation and any subsequent empirical publications. While conducting interviews for my thesis and explaining the consent process, early responses highlighted the problematic notion of anonymity for participants engaged in qualitative research. Several participants asserted the significance of immortalizing their deceased loved ones in the pages of my (...) thesis, retaining ownership over their words and maintaining a public attachment to their personal identity. The preliminary responses also resonate with concerns regarding the ethics of assigning pseudonyms and anonymity to participants in qualitative research. Themes in the extant literature tend to centre on issues of researchers’ accountability and transparency towards participants or respect. The present article contributes to the debates surrounding anonymity and confidentiality within qualitative research, and also expands on specific issues pertaining to bereavement research ethics. (shrink)

As genetic research increasingly focuses on communities, there have been calls for extending research protections to them. We critically examine guidelines developed to protect aboriginal communities and consider their applicability to other communities. These guidelines are based on a model of researcher-community partnership and span the phases of a research project, from protocol development to publication. The complete list of 23 protections may apply to those few non-aboriginal communities, such as the Amish, that are highly cohesive. Although some protections may (...) be applicable to less-cohesive communities, such as Ashkenazi Jews, analysis suggests substantial problems in extending these guidelines in toto beyond the aboriginal communities for which they were developed. (shrink)

The number of legal and nonlegal ethical regulations in the biomedical field has increased tremendously, leaving present-day practitioners and researchers in a virtual crossfire of legislations and guidelines. Judging by the production and by the way these regulations are motivated and presented, they are held to be of great importance to ethical practice. This view is shared by many commentators. For instance, Commons and Baldwin write that, within the nursing profession, patient care can be performed unethically or ethically depending on (...) the professional standards the nurses have set for themselves. They also hold that such standards are set when nurses become aware of the ethical codes available. As nurses are often not familiar with the codes, they do not all conform to them. Commons and Baldwin argue that nurses' ability to deal with ethical dilemmas is effectively secured with education on guidelines, creating a “barrier” between personal and professional values. (shrink)

Our claim in this paper is that not being identified as the data source might cause harm to a person or group. Therefore, in some cases the default of anonymisation should be replaced by a careful deliberation, together with research subjects, of how to handle the issues of identification and confidentiality. Our prime example in this article is community participatory research and similar endeavours on indigenous groups. The theme, content and aim of the research, and the question of how to (...) handle property rights and ownership of research results, as well as who should be in charge of the research process, including the process of creating anonymity, should all be answered, before anonymity is accepted. (shrink)