ETHICS IN RESEARCH INVOLVING HUMANS: A CRITICAL ANALYSIS OF KEY PRINCIPLES
Ethics in Research
Humans are a curious lot. We seek to learn and know more about ourselves, the world around us, and the worlds beyond our world. By engaging in research, we have “enriched and improved our lives and human society as a whole” (Secretariat on Responsible Conduct of Research (Canada), 2016, p. 1).
In Canada, research involving the study of humans is subject to and governed by the ethical standards outlined in the Tri-Agency Framework: Responsible Conduct of Research (Secretariat on Responsible Conduct of Research (Canada), 2016). In general, the Framework requires that such research be conducted in a positive environment such that, for researchers, it connotes professionalism and the use of professional standards in their obligation to ensure honesty, integrity, thoughtful inquiry and rigorous analysis when sharing findings (Secretariat on Responsible Conduct of Research (Canada), 2016).
Braun (2017) outlines key considerations in this regard, namely being diligent during the consent-acquiring process; applying fairness, equity and inclusivity in the participant selection process; maintaining confidentiality and privacy of participant identity throughout; safeguarding data before, during and after the study; and mitigating the effects of conflict of interest and power dynamics in situations in which the researcher holds a dual role as the teacher. Etuaptmumk, or two-eyed seeing, also suggests that researchers develop an awareness about the evolving and meaningful relationship they have with study participants and that they work toward respecting and honouring that relationship (Bartlett et al., 2012).
This paper offers a critical analysis regarding the major ethical principles that underlie all research.
The Need for Ethics
For the purposes of most research, ‘ethics’ refers to “culturally driven choice making around the moral values that drive behaviour in the specific context of commissioning and undertaking evaluation and research” (Groves Williams, 2015, p. 2).
Brant Castellano (2008) relates the story of a researcher who was engaged in sampling blood from members of the British Columbia communities of Nuu Chah Nulth for diabetes research. Finding no new insights, the researcher then made use of the samples for other purposes without permission, resulting in releasing findings regarding the genetic ancestry of the Nuu Chah Nulth that were misaligned with community members’ sense of identity and community history. This is but one of many examples in which researchers violated their own personal integrity as well as host community rules of behaviour (Brant Castellano, 2008).
In order to avoid scenarios like this, researchers are obligated to respect human dignity by adhering to ethical principles (American Psychological Association, 2017; Brant Castellano, 2008; Vanclay et al., 2013). Principles of ethics, therefore, provide context for researchers and decision-makers about the “’right’ behaviour” (Groves Williams, 2015, p. 2) in which to engage when conducting research. Moreover, given the non-dichotomous nature of ethical issues in studies involving humans (Guillemin & Gillam, 2004, as cited in Vanclay et al., 2013), it is imperative that researchers demonstrate an active awareness to inform their reflexive practice (American Psychological Association, 2017; Fisher, 2008, as cited in Vanclay et al., 2013).
Respect for Participants
One of the fundamental and overarching principles of ethics, researchers or anyone involved in data collection must remain non-judgmental while capturing the depth and full meaning of participants’ stories (American Psychological Association, 2017; Bartlett et al., 2012; Vanclay et al., 2013). Respect extends to acknowledging the relationship that exists and evolves between researcher and participants (Agee, 2009; American Psychological Association, 2017; Department of Health, Education and Welfare, 1979; Korstjens & Moser, 2017) and to demonstrating cultural sensitivity (Pilarska, 2019). Respect is especially critical in situations in which participants require special protection, such as those with diminished autonomy and those who are vulnerable or marginalized (American Psychological Association, 2017; Department of Health, Education and Welfare, 1979; Vanclay et al., 2013). Respect also includes researchers restricting their inquiry to the research question(s) at hand and not intruding unnecessarily on the private lives of participants (Vanclay et al., 2013).
This is also the case for Indigenous participants when respect must be broadened to include acceptance of the validity of Indigenous ways of knowing and being (Bartlett et al., 2012; Pilarska, 2019), adherence to community protocols (Bannister, 2018; Brant Castellano, 2004, 2008), and on researchers acquiring first-hand experiences, internalizing the process of meaning-making, and conveying learnings arising from these experiences through appropriate means such as ritual and storytelling, supported by mindfully selected technologies (Bannister, 2018; Kilian et al., 2019; Peltier, 2018). Researchers must also respect “both rights of self‑determination and responsibilities of care to past, present and future ancestors and to other sentient beings through stewardship of lands, airways, and waterways” (Bannister, 2018, p. 218).
The second fundamental and overarching principle of ethics, informed consent, as its name implies, indicates that participants must be provided sufficient relevant information about the study, including funding sources, and the implications of their participations so that they can make an informed, voluntary decision about their involvement (American Psychological Association, 2017; Department of Health, Education and Welfare, 1979; Vanclay et al., 2013). Researchers must disclose all details regarding the risks of participation including the disposition of the data collected (Vanclay et al., 2013). Typically captured as signed documents, informed consent forms, including specific permissions received for audio or video recording, should be retained by researchers for up to several years in the event an audit or other questions arise (American Psychological Association, 2017; Vanclay et al., 2013).
As implied by informed consent, participation must be voluntary and free from any form of coercion or threat (American Psychological Association, 2017; Department of Health, Education and Welfare, 1979; Vanclay et al., 2013). Any stipend or honourarium that is given must be fair and equitable, respecting participants’ time engaged in the study (American Psychological Association, 2017; Vanclay et al., 2013), must not be unduly withheld in the form of a threat, and must not be excessive so as to constitute a bribe (Vanclay et al., 2013). Voluntary participation by default also implies voluntary withdrawal at any time, for any reason, without any repercussions (Vanclay et al., 2013). Participants may also request that their data be withdrawn (Vanclay et al., 2013).
No Harm to Participants
Related to both respect and informed consent, researchers must ensure that no harm befalls any participant. This includes both physical and psychological harm as well as ensuring that participants experience no adverse consequences related to their involvement in the study (American Psychological Association, 2017; Department of Health, Education and Welfare, 1979; Head, 2020; Vanclay et al., 2013). Anonymizing data is one of the means by which researchers can try to ensure the latter (Vanclay et al., 2013). Given that some research has the potential to spark emotions or memories resulting in distress, researchers are obligated to follow the interaction to resolution up to and including the potential need for assistive support or counselling (American Psychological Association, 2017; Vanclay et al., 2013). The concept of no harm extends to the protection and preservation of data from any nefarious access as well as ensuring proper disposal when necessary (American Psychological Association, 2017; Vanclay et al., 2013).
Related to respect and the concept of full disclosure, researchers should refrain from the use of deception or surreptitious practices, except in rare circumstances specifically approved by a research ethics board (American Psychological Association, 2017; Head, 2020; Vanclay et al., 2013).
Anonymity and Accuracy
Unless provided permission to the contrary by a participant, researchers are obligated to ensure and protect the anonymity of all participants as well as the data collected (Head, 2020; Vanclay et al., 2013). In some jurisdictions, participants also have the right to review and have corrected an errors they identify in the transcription of their data (Vanclay et al., 2013) and to ensure that their intended meaning is captured in full (Bartlett et al., 2012). Researchers must often make judgements about which data is appropriate to disclose. Any other data collected must remain in complete confidence (Head, 2020; Vanclay et al., 2013).
Validity, Reliability and Reproducibility of Findings
Sampling is critical to the credibility and reliability of any research project (Bhardwaj, 2019; Martínez-Mesa et al., 2016). Given that inferences are derived from data collected from a sample, it is imperative that sampling efficacy be paramount in the process. Employing a purposive approach to identifying a representative sample provides dependable conditions for credible and reliable meaning making and inference finding (Department of Health, Education and Welfare, 1979; Head, 2020; Schreuder & Gregoire, 2001; Tracy, 2013).
The concept of ethical space was introduced into research ethics discourse by Willie Ermine, Cree philosopher and educator, referring to it as the “place between worldviews, an ‘abstract space’ created when the intentions of Indigenous and Western worldviews confront each other” (Ermine, 2000, as cited in Bannister, 2018, p. 222). Ethical space requires ongoing and deferential negotiation and cross-cultural collaboration (Bannister, 2018) and has come to denote an interaction of spiritual significance ( Ermine, 2015, as cited in Bannister, 2018, p. 223):
[E]thics has to do with the human spirit – which is unseen, and the unseen is the unknown. ... so we have a hard time working with it. Nevertheless, when we look at the spiritual level, a spirit inside each and every one of you can see the spirit of another person. These are the teachings that we go through with our old people, our spiritualists. ... if we can do this [relate to one another] at that level, then we have a different paradigm or a different formulation that we can work with. ... When we’re talking about the ethics, it’s at this level that things really start to happen, that the critical mass of energies, of spiritual people working together, can produce profound results.
Ethical space is not about combining Indigenous and Western perspectives. Rather, it is about looking at both worlds long enough to identify connections and then meaningfully creating a new story linking both original perspectives (Bannister, 2018), very much like two-eyed seeing.
Challenges to Ethics Compliance
Increasingly, the global scope of research creates a challenge for researchers intent on compliance with ethics principles (Head, 2020). This is due to varying requirements and perspectives on concepts such as vulnerability and respect resulting from multi-team, multi‑country, multi-sectoral and multicultural research projects (Guerra et al., 2019; Head, 2020). The World Health Organization (2015, as cited in Guerra et al., 2019) highlights the additional challenges of obtaining informed consent and ensuring the safety and anonymity of participants given the potential interference of politics and economics. At the same time, as Froomkin (2019) and Head (2020) argue, big data makes it increasingly difficult for researchers to fully disclose during the informed consent process since information that has been de‑identified can, in some cases, be re-identified, “when DNA is collected” (Froomkin, 2019, p. 1). Head (2020) refers to full disclosure in such cases as a growing issue of deontology, persistence with a given policy or rule, such as assurances of anonymity, without consideration for the effects of doing so.
At times, researchers may find themselves in the dilemma of conflicting ethics – between the ethical principles of a research organization (i.e. university), the ethical principals of the community or participants being studied, and their own personal ethical principles (Amundsen & Msoroka, 2019; Head, 2020). In response, researchers have been encouraged to adopt the practice of situated ethics in which greater weight is given to socio-political considerations than to traditional ethical principles (Amundsen & Msoroka, 2019).
With the recent surge of developments in the field of artificial intelligence, Floridi argues that the discourse related to ethical principles has shifted from “the what to the how: not just what ethics is needed but also how ethics can be effectively and successfully applied and implemented in order to make a positive difference” (2019, p. 185). As one example, he cites the malpractrice of digital ethics shopping: “choosing, adapting, or revising… ethical principles, guidelines, codes, frameworks, or other similar standards… from a variety of available offers, in order to retrofit some pre-existing behaviours… and hence justify them a posteriori, instead of implementing or improving new behaviours by benchmarking them against public, ethical standards” (Floridi, 2019, p. 186).
In Closing: Debrief
Implicit in two-eyed seeing are the core researcher responsibilities of reciprocity, accountability and co-learning (Hogue, 2016; Peltier, 2018; Todd Ormiston, 2010). These can only be effectively achieved when the researcher mindfully establishes ongoing, dynamic and respectful relationships with those participating in the research, including communities, participants and other partners (Harder et al., 2018; Head, 2020; Hogue, 2016; Kilian et al., 2019; Peltier, 2018). From an Indigenous perspective, the act of actually conducting research is only as effective at its conclusion as the relationships with its stakeholders are solid (Harder et al., 2018; Kilian et al., 2019; Peltier, 2018; Todd Ormiston, 2010).
Part of the ongoing relationship is the responsibility of researchers to close the loop by providing an opportunity for participants to learn “about the nature, results, and conclusions of the research” (American Psychological Association, 2017, p. 11) and to remedy any participant misunderstandings (American Psychological Association, 2017; Bartlett et al., 2012; Kilian et al., 2019; Todd Ormiston, 2010).
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