Projects which Refer to Ethical Guidelines
In line with a directed content analytical approach (Hsieh and Shannon 2005, p. 1281), targeted questions about the category “ethical guidelines” were asked. In twenty-four (43 %) of the applications, references to ethical guidelines, legislative Acts or protocols are wholly absent and therefore not discussed at all. As for the remaining thirty-two (57 %) proposals, ethical considerations are most frequently manifested by referring to either the CODEX (rules and guidelines for research) of the VR (Swedish Research Council), to the regional ethical review boards or to the national Ethical Review Act. In ten of these cases two or more ethical guidelines are referred to in combination. In six of the proposals the issue of research ethics is present, but in a rather subtle and indefinite manner, as in, for instance, expressions such as “generally accepted ethical values” or “Guidelines for social sciences researchers”. Four of the applications include references to and/or discussions on international ethical guidelines for indigenous research. These guidelines are, however, different from each other and have their origin in several indigenous and national contexts.
The results clearly demonstrate that there is a divergence among Swedish scholars when it comes to what ethical guidelines or principles to refer to in relation to Sami research projects. This indicates uncertainty that can be related to what Johnsson et al. have pointed out: there is an increasing number of ethical guidelines to consider in a Swedish scientific context, but at the same time there is a lack of clear guidance on how they relate to each other, leading to the fact that “many researchers struggle with inconsistent sets of norms” (Johnsson et al. 2014, pp. 39–40). In addition, in the present study at least, individual researchers demonstrate varying approaches to ethics, which indicates that scholars are rather inconsistent in their views on what discussions around research ethics should include. And it should perhaps be reiterated at this point that of the ten proposals that were granted funding only six of them made reference to ethical guidelines.
It is clear from the foregoing that there exists great uncertainty among researchers when it comes to defining what research ethics is about and how to approach it in specific research projects. Three different approaches are identified. The first approach appears to be to ignore the issue: no less than 43 % of the proposals do not refer to any ethical guidelines or protocols. Of course this does not automatically mean that discussions of an ethical character are absent, but it does show that these researchers do not necessarily link available ethical guidelines to their own research. A second approach is typified by the group of researchers that seek to follow national ethical standards and legislation governing research ethics (see Table 1). These researchers are likely to meet the existing requirements and can position themselves within the established system, thereby running a limited risk of being considered unethical from a legislative and/or academic point of view. It is a legitimate and safe position, but one that does not necessarily correlate to what is considered to be ethical from the point of view of indigenous peoples. The third approach is in some ways the most interesting; the group that embodies this approach looks in a different direction, acknowledging an international and more culturally sensitive understanding of research ethics by encouraging discussions that take indigenous perspectives into account. However, adopting this somewhat broader interpretation of research ethics does not imply that there is consensus in how this should be done or what ethical guidelines should be followed. Indeed, connecting theory to practice appears to be a struggle for those who are willing to accept a broader definition of research ethics. In this respect, it cannot be overlooked that Swedish academia does not provide the individual scholar with any clear and helpful instruments for how to accomplish indigenous research that is ethically sustainable. When applying ethical guidelines to research processes Eriksson et al. argue that “there will always be a gap between the rules and the practice they are meant to regulate”. Interpretation shifts between individuals, which inevitably means that ethical behaviour depends on the perspectives and ethical foundations of the specific researcher (Eriksson et al. 2008, p. 16). In line with this reasoning, the results here demonstrate a notable glitch 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. International discourses around ethical guidelines for indigenous research are identified as an inspiration to some scholars within the field, but these guidelines are seldom adjusted to Sápmi (Sami land) or to the specificities of Sami society; as a consequence, implementing the guidelines in a practical way while conducting Sami research at Nordic, national, regional and local levels will always be difficult without making significant adjustments or local adaptations. “Trying to do things right” by making use of ethical guidelines for research is an honourable but evidently complicated approach that is readily discussed in theory, but more difficult to apply in practice.
Discussing Research Ethics
Apart from references to specific ethical guidelines in the source material, discussions on research ethics can also be found in the running texts of the applications, and all fifty-six proposals contain some discussion of ethics. By departing from a conventional analytical perspective, a number of categories were identified in the source material and organized into clusters. In this part of the study, and once again following the definition of Hsieh and Shannon, the categories derive from the content of the texts and were not, in contrast to the first part of the study, predefined before approaching the content of the proposals (Hsieh and Shannon 2005, p. 1279). What is emphasized as important differs between the submissions, and four separate categories stand out: collaboration, dissemination, informed consent and anonymity. In the ten proposals that were granted funding, nine highlighted collaboration as important, seven discussed the issue of dissemination, three underlined anonymity and two the question concerning informed consent (see Table 2). These categories are now considered in turn.
In forty-one of the applications (73 %), the importance of collaboration or cooperation with different Sami actors, organizations or institutions is prominently expressed in the running text. The Sami Parliament is given an important role as a possible collaborative partner in the research process in some cases (12 %), as is the National Sami Association (SSR) (7 %). However, it is important to remember that the Sami Parliament itself has not officially promulgated any research policy or ethical guidelines for researchers to consider. At the same time, it certainly lies within the discourse that the Sami Parliament should be seen as a natural party to consult during research processes (Svalastog 2013, p. 18).
Some Sami individuals appear in the applications as named, and various Sami institutions are mentioned in terms of possible partners. Collaboration is described in terms of creating Sami reference groups, or engaging Sami reference persons within and/or outside academia. In addition, other scholars within the research area are also occasionally mentioned as possible reference persons. The role of these proposed reference groups or persons varies; in some cases, Sami participants are described as actors that are offered influence and participation from the start of the project:
“Representatives from these organizations will be part of the research project from the beginning and involved in everything from designing questionnaires to interpreting results. A reference group will be established and regular meetings held during the full time of the project.”
In other cases, Sami reference persons or groups are presented as having the role of experts whose knowledge could be of benefit to the project, but without clear involvement or the possibility of influencing the research process as such:
“We will put together a reference group with representatives from the National Union of the Swedish Sami People (SSR), the Sami Parliament, The Swedish Environmental Protection Agency, and the County Administration Boards. This reference group will meet with the researchers at least once every year.”
It is clear that researchers in general are positive about engaging reference persons or groups to be a part of the research process. However, how collaboration is supposed to be accomplished, who will control it and what strategies and methods are to be used in order to carry through collaborative processes all vary in both definition and description.
The results of the present study indicate that the concept of collaboration is focused around issues such as transparency and information-sharing directed from the academy to the Sami community; the latter is given the opportunity to react, but is not necessarily accorded the power to influence the knowledge production process, which remains firmly in the hands of the researchers:
“We will form a reference group including herders and representatives from Sámi organisations and management agencies. Reindeer herders in our study areas willfully participate in the project through discussions and practical work in the field. This collaboration will ensure that the reindeer herders experience and perspectives are taken into consideration and form the basis for our scientific work.”
In a general academic context in Sweden (and internationally), collaborative processes have primarily been focused on economic and technological development rather than human and societal values (Ett lyft för forskning och innovation, proposition 2008/09:50 [An improvement for research and innovation. Government Bill]. Knowledge production has a history of being understood as a task for the scientific community alone to accomplish, but this is an opinion that is being increasingly contested within the field of indigenous research. Instead, the involvement of knowledge users as equal partners in the scientific process is encouraged, the aim being to produce knowledge that is relevant and useful to both community and academy (CIHR 2012). Critical voices have, however, pointed out that the drive to establish equal partnerships in research processes needs to be handled carefully in order to avoid the risk of handing over responsibility for the research project to someone other than the researcher, who might then be held accountable for any errors that are found (Brännlund 2015). Furthermore, it has also been noted that collaboration through culturally careful strategies is something that researchers often strive to accomplish, but even with the best of intentions many cultural missteps are made along the way (Schinke et al. 2010).
The second most frequently mentioned theme in terms of the ways in which the subject of research ethics is addressed relates to the issue of disseminating research results (see Table 2). Communicating research results is frequently underscored as one of the main goals; however, to whom and how these results are to be communicated differs. Most commonly, dissemination of the results is discussed in terms of popular publications, workshops and other outreach activities, and expressed first and foremost as directed towards Sami stakeholders, Sami groups and Sami society as a whole:
“Sámi cultural associations and the National Association of Swedish Sámi (SSR ) play a significant role for communication of results with stakeholders. Dissemination of results will be carried out along the research process via a project webpage and through popular science presentations with Sámi associations.”
Research dissemination is also frequently directed towards the academic society by means of scientific conferences and publishing the results in scientific journals aimed at an academic public:
“For the dissemination it is important that the results are presented at relevant conferences and the budget include eight papers at five different conferences, two national and three international.”
In the sections of the applications that highlight the issue of dissemination, a distinction is generally made between communicating results to “the scientific community” on one hand, and “the Sami community” on the other. Indeed, dissemination of the new knowledge generated is to be transferred either to the scientific or the Sami community – not, it would seem, the two together. The risk is thereby similar to what Adams and Faulkhead have highlighted, that this separation “reinforces division between community processes and academic methodologies, methods, ethics, permissions and ways of representing and presenting results” (Adams and Faulkhead 2012, p. 1016). This division in turn risks the possibility that academically produced knowledge loses legitimacy amongst the particular indigenous community that is in focus (Ledman [Drugge] 2015).
As illustrated in Table 1, the source material confirms that some researchers refer to general ethical principles or national legislation when discussing ethical issues. It should be noted that these guidelines in themselves include sections focusing on basic principles concerning informed consent, anonymity and voluntary participation. Thus, referring for instance to the CODEX (rules and guidelines for research) of the VR entails an assumption that certain ethical principles will be followed. In addition to references to the ethical principles inherent in the guidelines mentioned, informed consent is explicitly described as important in 39 % of all the studied research submissions, albeit usually without any in-depth discussion. The following is a typical example:
“Ethical consent will be obtained prior to the start of the project, according to Swedish legislation (Act concerning the Ethical Review of Research Involving Humans, 2003:460).”
Focusing on informed consent as an important ethical issue can be related to general discussions within the academic context, and be seen as an attempt to avoid repeating past atrocities – which is not too strong a word – in research practices (for instance, the case of Tuskagee). Furthermore, informed consent often dominates the ethical review process (Johnsson et al. 2014, p. 38; Eriksson et al. 2008, p. 15). Added to this and seen from a post-colonial perspective, research in Sweden related to the Sami people has a history of seeking to prove that the Sami are inferior to the Swedes. Race biology research in the 1900s supported far-reaching political decisions, leading to negative consequences that still affect many families in Sami society today (Drugge 2016a; Svalastog 2013). In light of this deeply troubled historical backdrop, prioritizing informed consent may be regarded as an important way to prevent future abuse in the name of research.
In order to protect individual subjects within studied groups, confidentiality through anonymity is often promised by researchers (Svalastog and Eriksson 2010, p. 104). In most cases, groups studied consist of a large number of people in which the individual is easily hidden. However, in the context of a sub-group identification is sometimes possible even though details are changed (Svalastog and Eriksson 2010, p. 106). Within the field of indigenous research, the issue of anonymity has been highlighted as problematic for several reasons. Anonymity is discussed from a different angle to the academic norm, challenging the default position by suggesting that it risks obscuring indigenous agency and knowledge. Scholars such as Peter Kulchyski highlight the importance of naming in order to prevent homogenization of an indigenous group and avoid mystifying; the individual and his or her specific knowledge should be acknowledged (Kulchyski 2005, p. 19). Similarly, Eriksson and Svalastog argue that “anonymity risks making research distressingly similar to stealing”, particularly when research relates to “resources, knowledge, property and traditions”. Instead, the “default” anonymity is contested and careful adjustment to the specific theme, questions and context of each research project is recommended (Svalastog and Eriksson 2010, p. 110). The decision to safeguard or neglect anonymity is in fact in itself an issue of ethical character that needs to be discussed in each specific context (Scarth 2015, p. 7).
Discussions about anonymity occur in 29 % of the submissions considered here; they tend to depart from three separate standpoints. On one hand, anonymity is included as an integral part of the references to Codices, legislative Acts or general ethical guidelines. In that context, the issue of anonymity is presumed as a way to protect the integrity of the research participants, and is highlighted as something which is straightforward and unproblematic:
“In all steps, the integrity and anonymity of the informants will be guaranteed.”
A second way of discussing anonymity is by explaining it as an open issue that is left to the participants themselves to decide; this enables them to consider what has traditionally been seen as an important issue in academia from a variety of alternative angles. Sometimes, and in the face of conventional thought, a lack of anonymity may not be seen as a problem, as in the following example:
“I have, in agreement with my interviewees, decided that the interviewees will be presented with full name and position. The normal procedure for qualitative research is to anonymize the interviews. Neither the interviewees nor me would like that.”
Thirdly, anonymity is discussed in direct relation to the indigenous context, acknowledging that the Sami community is small, which makes it difficult to guarantee anonymity:
“Indigenous communities are commonly small, and maintaining anonymity may well involve more than simply using fictitious names.”