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WASP (Write a Scientific Paper): The ongoing process of ethical decision-making in qualitative research: Ethical principles and their application to the research process
Early Human Development 133 (2019) 48–51
Contents lists available at ScienceDirect
Early Human Development journal homepage: www.elsevier.com/locate/earlhumdev
Best practice guidelines
WASP (Write a Scientific Paper): The ongoing process of ethical decision-making in qualitative research: Ethical principles and their application to the research process
T
ABSTRACT
The nature of qualitative research is fundamentally different from quantitative research. In depth understanding and exploration of specific phenomena or their significance usually involve a data collection process with a select few participants with whom the researcher interacts over an extended period of time. The participants are not anonymous to the researcher and they also reveal personal information. Research participants' rights need to be protected, even more so in this type of qualitative work. This chapter discusses how ethical decision-making needs to be ongoing during the research process by applying the principles of respect for persons, beneficence and justice. Respecting research participants, involves addressing issues related to informed consent, anonymity and confidentiality while also reflecting on the researcher's impact on the participant and the research context while the research is carried out and also when the research is disseminated. The second principle of beneficence calls for the researcher to ascertain that participants' safety is given utmost importance. Finally, justice refers to ensuring that the burdens and benefits of research are shared fairly without any form of discrimination or manipulation. These principles offer the researcher flexible tools to reflect on ethical decisions as they arise throughout the research process.
1. Introduction Qualitative research is often based on a Constructivist paradigm with the aim of an in depth understanding or exploration of phenomena or meanings [7,26]. To attain these aims, the nature of such research usually involves only a select number of participants with whom the researcher is often involved in face-to-face interactions during the data collection process. Participants are often asked to share personal information about themselves and their experiences through interviews, focus groups or observations [25,27]. These aspects of qualitative research imply that the researcher has to engage in ethical decisionmaking throughout the various stages of the research to ensure that the participants' rights are protected. In contrast, in quantitative research participants are more numerous and there is a much greater possibility for anonymity, and while ethical issues still need to be considered carefully, issues such as anonymity and confidentiality are often more straightforward to address. On the other hand, in some cases of qualitative research, particularly when exploring very specific phenomena and issues where the population in question is very small, or when using particular methods such as case study research where only one person is the focus of the study, the way the researcher takes ethical decisions is even more crucial to the research process. 2. Ethical principles applied to qualitative research The philosophical branch of ethics presents the researcher with various ethical frameworks upon which to base ethical decisions. Consequentialism, duty-based ethics, virtue ethics and the ethics of care are among those commonly used. However, moral pluralism can exist also within each of these frameworks. Using Principlism, ethical decision-making can be based on a set of principles irrespective of the ethical framework one adheres to [6,19]. The Belmont Report [24] is among the earliest attempts at formalising ethical principles in https://doi.org/10.1016/j.earlhumdev.2019.03.011
0378-3782/ © 2019 Elsevier B.V. All rights reserved.
biomedical and behavioral research. It came about as a reaction to several unethical research studies which were abusive to human participants. Examples of such research include Stanley Milgram's experiments, the Tuskegee Syphilis study and the Stanford prison experiment among others. Hughes et al. [19] list several other codes of ethics that have been developed in Europe which outline the conditions to abide by when conducting research with humans. The Belmont report focuses on the three principles of respect for persons, beneficence and justice. Instead of being invariable rules, these guiding principles are flexible tools, that aim to encourage debate and careful consideration of the ethical aspects of the research process, in such a way that the individuals' rights are safeguarded. Creswell [5] cautions against adopting a static approach when addressing ethical issues in research. Instead, these issues need to be addressed in the different phases of research, starting from the articulation of the research problem, and the research design [20] until the research is disseminated. Maintaining ethical standards has become a priority for most higher education and research institutions, whereby a researcher needs to attain ethical approval by an appointed Institutional Review Board (IRB) before commencing a research project with human participants [19,28]. The University Research Ethics Committee (UREC) is the IRB of the University of Malta. The sections that follow present the three principles identified in the Belmont Report and discuss their applicability to different stages in qualitative research. 3. Respect for persons This principle refers to treating those participating in the research process as autonomous beings who can form their own opinions and make their own choices. Treating individuals with respect entails the assurance that they are given sufficient information to make considered judgements, that their opinions are accepted and they are allowed the freedom to act upon these opinions. In the case of those individuals who
Early Human Development 133 (2019) 48–51
Best practice guidelines
are vulnerable and have limited autonomy because of age, illness or disability, their protection is at the heart of this principle.
Malta. If the research participants belong to a very small group and they can be identified easily, these strategies might not always be enough. In such circumstances, the dissemination of the study is usually restricted for a few years [25]. While the researcher promises participants confidentiality, in research carried out within a group, the researcher also needs to discuss how participants will address within-group confidentiality [17]. Often, at the start of a focus group, the researcher brings attention to this matter and elicits the participants' cooperation in ensuring that they will maintain confidentiality for each other. Promising confidentiality and anonymity also requires the researcher to have a plan on how to manage and store the data collected. The anonymised data should be stored securely and any identifiers removed from the data should be stored separately [4]. The consent form should also specify how long the data will be stored, in compliance with data protection laws such as the General Data Protection Regulation (GDPR) and who will have access to the data.
3.1. Addressing informed consent The main implication that this principle brings about for qualitative researcher is how to tackle the issue of informed consent. For consent to be valid [19] those invited to participate in the research should be provided relevant and sufficient information about the research goals, what participation entails and the extent of any risks involved. They should also be able to choose to participate in the research process voluntarily. Some research designs such as those that involve data collection at different stages even call for obtaining consent during every phase of the research (multi-stage consent). Obtaining consent from participants is often done by means of a consent form, signed by both the researcher and participant after the research process is explained verbally, in writing, or by a combination of both. Consent forms outline the conditions under which the research will be carried out and which the researcher will abide by. These include details about the study, duration and frequency of participation, the type of information collected, the right to refrain from answering specific questions, the right to withdraw from the study, how the participants' anonymity and privacy will be protected, how the data will be stored and who will have access to it, who is sponsoring the research, and that no deception is involved in the research process. All these aspects are negotiated when informed consent is explained. However, addressing them at the stage of obtaining the participants' consent is merely a first step. The researcher is accountable to adhere to these conditions throughout the research process as part of her ethical responsibility. In the case of vulnerable groups, such as minors, persons with disabilities or debilitating illnesses, consent is often sought from parents or guardians. Whenever possible, however, the researcher should still seek to attain the participants' assent [22]. For this purpose, the study is to be explained to these participants in a way that is accessible to their specific situation and they are asked to confirm that they accept to take part. Before seeking consent and assent, the researcher is to ensure that participants are protected, that the benefits of participating supersede any foreseeable risk of harm and that their participation in the research will not marginalise or disempower them further. These aspects are presented when discussing the principles of beneficence and justice in the sections that follow.
3.3. Reflecting on the researcher's impact Another way of respecting the research participants is to consider the power dynamic that the researcher's role can create [32] and to ensure it is not taken advantage of. Researchers are often associated with authority and this can create a power imbalance between researchers and participants [18]. For qualitative research, which involves in depth discussions with participants, it is crucial for the research process that the participants trust the researcher sufficiently to be able to share their thoughts and experiences. Thinking about the relationships the researcher wants to have with the research participants and how to help develop such relationships are some of the ethical considerations in research design [20]. Although it might not always be easy to anticipate how the research relationships will develop, the researcher can prepare herself. When the researcher positions participants as the experts [15] and that their experiences and thoughts are a significant contribution, this can level the research field. It also helps participants to share more freely without feeling judged, rather than withhold information that can be relevant to the study or be influenced by social desirability biases [8]. The researcher's age, gender, cultural background and other characteristics can also impact the research participants. While it is hardly possible to eliminate these cues from the process, the researcher's reflexivity allows her to remain sensitive to the social context of the research relationship [32].
3.2. Ensuring confidentiality and anonymity
3.4. Referring to participants
When explaining consent and assent, the researcher promises participants confidentiality and anonymity. Maintaining confidentiality implies that any information that is obtained during the research process is not revealed under any circumstances unless the participant grants permission. Since research is aimed at generating new knowledge, and disseminating it, offering complete confidentiality to participants is not entirely possible [30]. Data is thus anonymised so that the participants' identity is disguised, often through the use of pseudonyms, and any other identifiers are removed from the data. Ideally, the data is anonymised as early as possible, during the transcription process [4]. In qualitative research with few participants, presenting data about participants might compromise their anonymity even if pseudonyms are used. Morse and Coulehan [23] recommend several strategies to prevent this. Some of these strategies include presenting participant data in groups, changing identifiers, presenting only those participant characteristics that are relevant to the research, blurring recognisable faces in visual data, and re-reading the research from the participants' perspective before submitting it. Orb et al. [25] also recommend that when direct quotations are used, as is often the case in qualitative work, participants are asked to approve the use of the chosen quotations. The researcher also needs to be mindful of the context in which anonymity is promised. This is particularly relevant for a small country such as
Some ethical guidelines refer to research participants as ‘subjects’. It can be argued that another way to respect research participants is refer to them as ‘participants’ and treat them as such. The term ‘subjects’ often implies that they are subjected to the research process and research procedures. Instead, the use of the term ‘participants’ reflects an understanding of their agency to partake in the research process with the right to grant or withhold consent and information [5]. Research is carried out with participants rather than on them or to them. They are fellow human beings who deserve to be respected rather than seen only as a means to end. 3.5. Disseminating research Genzuk [10] also recommends that participants are consulted about how they want to be represented when reporting the research findings. Using pseudonyms is the common practice. One way of showing respect to the participants' story is to ask them to choose their own pseudonyms [1]. In some cases, the participants might even choose to be named. Giordano et al. [11] discuss the implications of offering non-confidentiality. In such cases, the researcher is ethically responsible for reflecting about the impact of this choice on the study and on the 49
Early Human Development 133 (2019) 48–51
Best practice guidelines
participants, and to help participants understand the implications of this choice. Ethically, researchers are expected to identify ways in which they can communicate the knowledge attained from research to the interested stakeholders. When disseminating the research, the researcher shows respect for the participants through ensuring that the findings are not fabricated or distorted, and that the way the data is interpreted is as free from biases as possible [5]. Another way in which participants' contribution in the research is valued is to offer them the possibility of reading the results [2,10].
to consider the termination of the research process. This might be a very difficult decision, particularly when the research timeline includes projected deliverables. Ideally, researchers have a group of peers or mentors with whom to discuss ethical issues as they arise. It is always prudent to err on the side of caution to ensure that no harm comes to the participants. 5. Justice The principle of justice refers to the equal treatment of all. In the research context, this implies that everyone has an equal opportunity to share the benefits and burdens of the research without any form of prejudice based on their characteristics such as age, gender, race, religion, socio-economic status, among others. This principle is based upon a long history of research participants being poor, black or prisoners, while the benefits were enjoyed by the privileged [24]. While this might not be the case nowadays, the researcher is nonetheless ethically obliged to ensure that her research does not create unfairness or discrimination in any phase of the research, but primarily with the selection of research participants, so that no group is excluded from research [28].
4. Beneficence The principle of beneficence refers to the researcher's obligation to ensure that the research participants' wellbeing is always safeguarded. This principle is often translated into two maxims, those of doing no harm and to do one's utmost to ensure that the benefits are maximised while the harms minimized. 4.1. Doing no harm Before pursuing a research initiative, the researcher is ethically obliged to weigh the expected benefits against the possible risks of harm. Apart from physical or psychological harm, there are other types of harm, such as legal and social harm, and the researcher is dutybound to consider these as well [24]. When the risks are too high, the benefits often have to be sacrificed. The researcher has to evaluate when the pursuit of benefits can be justifiable despite some risk involved. This should not be taken lightly, especially in delicate and complex situations where the risks cannot be easily quantified or are hidden. Before pursuing any course of action, the ethical research also tries to identify alternative ways in which the same benefits can be attained without the harms involved. Knowledge generated through high-quality methods of inquiry has both an extrinsic and an intrinsic value [19]. This extrinsic value lies in the benefits attainable for society. Shore [28] postulates that the principle of beneficence refers also to how the knowledge generated by research is translated into relevant actions for the community. However, the researcher's role is to reflect critically about what would be beneficial for the community and its context, as benefits can be relative.
5.1. Avoiding manipulation Orb et al. [25] explain that a distinctive feature of the justice principle is “avoiding exploitation and abuse of participants” (p. 95). Some research studies are aimed at improving the conditions for the disadvantaged and vulnerable. When identifying a research topic and research participants, the researcher is to ensure that participating in the research should not be a further burden on participants who are already afflicted. Participants should not be involved in research because it is convenient for the researcher or because they are easy to manipulate. In qualitative studies focused on specific subject areas, the population from which a sample is to be chosen might be limited in size. This might mean that for saturation point [9] to be reached during data collection, the researcher would need as many participants as possible. It would not be ethical to try to influences them or to exert undue pressures on them to keep them from withdrawing [21]. This principle also needs to be kept in mind when offering incentives to participate in a research study. While incentives might help the researcher access the targeted participants because they encourage participation [16], they can also become unethical undue influence if they are used to convince or coerce individuals to take part [12]. In some situations, particularly in psychological research, knowing the exact purpose of the study may influence participants. The BPS [3] distinguishes clearly between withholding some of the information pertaining to the research and explicitly providing incorrect information about the research. Participants cannot be deliberately misled without considerable justification. In fact, the use of deception is often unacceptable unless there are safeguards to ensure that it is done only when absolutely necessary and only if it can be ascertained that once the deception is revealed, participants will be not be negatively affected by it. Debriefing is the process of clarifying information about participating in a research and of removing any undesirable effects that the research has on the participants [29]. This often happens after data collection in any research study, but the researcher is specifically obliged to debrief participants when they are misled in any way because of the purpose of the research. Usually the researcher verbally informs participants about the nature of the research and provides any necessary further information. However, the format of the debriefing process can vary, depending on the nature of the study. Researchers often need gatekeepers to give them access to a specific population (such as when a service director grants permission to a researcher to contact the service users). It is the researcher's ethical duty to ensure that the gatekeepers are briefed about participant selection
4.2. Ensuring participant safety This weighing of harms against benefits needs to be sustained throughout the research process. Before embarking on the research project, the researcher is to ascertain that she has attained the relevant training and experience to conduct research. Such competencies would primarily safeguard participant wellbeing, and also ensure that the resource used to conduct the research can be translated into benefits [2]. Once participants are trusting the researcher, she is responsible for ensuring their safety. During a qualitative research process sharing lived experiences can be cathartic and empowering for participants, particularly if they feel that they are helping others [31]. However, participants may become distressed because the information they are asked to reveal makes them re-live traumatic or difficult experiences [25]. During data collection, the researcher might also learn that a participant is at risk of harming oneself or others. When this happens in a qualitative study, the researcher is well aware who the participant is and faces an ethical dilemma whether to break confidentiality and refer the participant for help or report the information, or else maintain her boundary as a researcher. It is the researcher's duty to have a back-up plan should such situations arise. One such practice could be the identification of support services where the participant can be referred to get help [2]. If the researcher becomes aware that the harms are outweighing the possible benefits attainable, it is her obligation towards the participants 50
Early Human Development 133 (2019) 48–51
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and all members of the selected population are given an equal opportunity to participate.
[3] BPS, Code of Human Research Ethics, British Psychological Society, Leicester, 2014. [4] A. Clark, Real Life Methods Working Papers: Anonymising Research Data, NCRM Real Life Methods Node, University of Leeds, Leeds, 2006. [5] J.W. Creswell, Research Design: Qualitative, Quantitative, and Mixed Methods Approaches, SAGE Publications, Los Angeles, 2009. [6] C. Ess, AoIR Ethics Working Committee, Ethical Decision-making and Internet Research: Recommendations From the AoIR Ethics Working Committee, Association of Internet Researchers, 2002 Retrieved March 11, 2013 from www. aoir.org/reports/ethics.pdf. [7] L. Finlay, ‘Rigour’,‘ethical integrity’ or ‘artistry’? Reflexively reviewing criteria for evaluating qualitative research, Br. J. Occup. Ther. 69 (7) (2006) 319–326. [8] R.J. Fisher, Social desirability bias and the validity of indirect questioning, J. Consum. Res. 20 (2) (1993) 303–315. [9] P.I. Fusch, L.R. Ness, Are we there yet? Data saturation in qualitative research, Qual. Rep. 20 (9) (2015) 1408–1416. [10] Genzuk, M. (1993). A Synthesis of Ethnographic Research. Occasional Papers Series. Center for Multilingual, Multicultural Research (Eds.). Center for Multilingual, Multicultural Research, Rossier School of Education. Los Angeles: University of Southern California. [11] J. Giordano, M. O'Reilly, H. Taylor, N. Dogra, Confidentiality and autonomy: the challenge (s) of offering research participants a choice of disclosing their identity, Qual. Health Res. 17 (2) (2007) 264–275. [12] R.W. Grant, J. Sugarman, Ethics in human subjects research: do incentives matter? J. Med. Philos. 29 (6) (2004) 717–738. [13] V. Grech, WASP - write a scientific paper course: why and how, J Vis Commun Med. 40 (3) (2017 Jul) 130–134, https://doi.org/10.1080/17453054.2017.1366825 (Epub 2017 Sep 19). [14] V. Grech, S. Cuschieri, Write a scientific paper (WASP) - a career-critical skill, Early Hum. Dev. (2018), https://doi.org/10.1016/j.earlhumdev.2018.01.001 Jan 17. pii: S0378-3782(18)30005-7. doi. [15] S. Grover, Why won't they listen to us? On giving power and voice to children participating in social research, Childhood 11 (1) (2004) 81–93. [16] E. Head, The ethics and implications of paying participants in qualitative research, Int. J. Soc. Res. Methodol. 12 (4) (2009) 335–344. [17] C.M. Heary, E. Hennessy, The use of focus group interviews in pediatric health care research, J. Pediatr. Psychol. 27 (1) (2002) 47–57. [18] S.D. Horner, Using focus group methods with middle school children, Research in Nursing & Health 23 (6) (2000) 510–517. [19] J. Hughes, D. Hunter, M. Sheehan, S. Wilkinson, A. Wrigley, European Textbook on Ethics in Research, (2010) (Publications Office of the European Union). [20] J.A. Maxwell, Designing a qualitative study, in: L. Bickman, D.J. Rog (Eds.), The SAGE Handbook of Applied Social Research Methods, SAGE Publications Inc, Los Angeles, 2008, pp. 214–253 2nd ed.).. [21] V.A. Miracle, The Belmont report: the triple crown of research ethics, Dimensions of Critical Care Nursing 35 (4) (2016) 223–228. [22] M. Morgan, S. Gibbs, K. Maxwell, N. Britten, Hearing children's voices: methodological issues in conducting focus groups with children aged 7-11 years, Qual. Res. 2 (1) (2002) 5–20. [23] J.M. Morse, J. Coulehan, Maintaining confidentiality in qualitative publications, Qual. Health Res. 25 (2) (2015) 151–152, https://doi.org/10.1177/ 1049732314563489. [24] National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Bethesda, Md, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, (1978) (Superintendent of Documents). [25] A. Orb, L. Eisenhauer, D. Wynaden, Ethics in qualitative research, J. Nurs. Scholarsh. 33 (1) (2001) 93–96. [26] J.G. Ponterotto, Qualitative research in counseling psychology: a primer on research paradigms and philosophy of science, J. Couns. Psychol. 52 (2) (2005) 126. [27] N. Sangasubana, How to conduct ethnographic research, Qual. Rep. 16 (2) (2011) 567–573. [28] N. Shore, Re-conceptualizing the Belmont report: a community-based participatory research perspective, J. Community Pract. 14 (4) (2006) 5–26. [29] F.E. Tesch, Debriefing research participants: though this be method there is madness to it, J. Pers. Soc. Psychol. 35 (4) (1977) 217. [30] R. Wiles, G. Crow, S. Heath, V. Charles, The management of confidentiality and anonymity in social research, Int. J. Soc. Res. Methodol. 11 (5) (2008) 417–428. [31] R.L. Woodgate, P. Tennent, M. Zurba, Navigating ethical challenges in qualitative research with children and youth through sustaining mindful presence, Int J Qual Methods 16 (1) (2017) 1609406917696743. [32] L. Yardley, Dilemmas in qualitative health research, Psychol. Health 15 (2) (2000) 215–228, https://doi.org/10.1080/08870440008400302.
5.2. Appreciating diversity Further applicability of the principle of justice relates to the researcher's ability to bracket her value systems to ensure an attitude of openness towards the participants' opinions and personal characteristics [31]. Often the researcher's and participants' values differ [2]. The researcher's reflexivity and awareness of differences, including a sensitivity to cultural differences [28] allows her to produce work that is free from biases, and that does justice to the participants' actual experiences, especially when the research is carried out with diverse groups. 6. Conclusion Finlay [7] argues that the positivistic criteria of reliability, validity and generalisability are not applicable to qualitative research. Instead, when evaluating qualitative research, it is required that researchers “move beyond criteria focused solely on procedural rigour and confirmability and, instead, apply ethical, literary and creative dimensions” (p. 322). Finlay [7] proposes caring as one of these dimensions. This encapsulates the researcher's sensitivity towards the participants' safety, her ethical integrity and reflexivity about the research process. Various ethical frameworks exist, nonetheless there are no universal ethical rules. Instead researchers have to consider “doing the right thing, for the right reason, in the right way, at the right time” ([6], p. 4). Principlism can be criticised because the ethical principles can be too abstract, or not sufficiently explicit and thus, some ethical issues may be overlooked or ethical decision making might not be consistent [28]. Despite these issues, the principles of respect for others, beneficence and justice presented are sufficiently flexible tools which the researcher can use to reflect ethically about her research and make ethical decisions. This chapter argued that the researcher's ethical accountability does not end once she goes through the formal procedures required by an IRB. It is her responsibility to be mindful of and address ethical issues as they arise through the research process, acting with integrity and ensuring that the principles of respect for others, beneficence and justice are withheld. Acknowledgments The inspiration for this series of papers arises from the international Write a Scientific Paper course (WASP - http://www.ithams.com/ wasp). [13,14]. Conflict of interest statement There are no known conflicts of interest associated with this publication and there has been no significant financial support for this work that could have influenced its outcome. References
Lorleen Farrugia, Department of Psychology, University of Malta, Msida, Malta E-mail address: [email protected].
[1] R.E. Allen, J.L. Wiles, A rose by any other name: participants choosing research pseudonyms, Qual. Res. Psychol. 13 (2) (2016) 149–165. [2] T. Bond, Ethical guidelines for researching counselling and psychotherapy, Couns. Psychother. Res. 4 (2) (2004) 10–19.
51
Contents lists available at ScienceDirect
Early Human Development journal homepage: www.elsevier.com/locate/earlhumdev
Best practice guidelines
WASP (Write a Scientific Paper): The ongoing process of ethical decision-making in qualitative research: Ethical principles and their application to the research process
T
ABSTRACT
The nature of qualitative research is fundamentally different from quantitative research. In depth understanding and exploration of specific phenomena or their significance usually involve a data collection process with a select few participants with whom the researcher interacts over an extended period of time. The participants are not anonymous to the researcher and they also reveal personal information. Research participants' rights need to be protected, even more so in this type of qualitative work. This chapter discusses how ethical decision-making needs to be ongoing during the research process by applying the principles of respect for persons, beneficence and justice. Respecting research participants, involves addressing issues related to informed consent, anonymity and confidentiality while also reflecting on the researcher's impact on the participant and the research context while the research is carried out and also when the research is disseminated. The second principle of beneficence calls for the researcher to ascertain that participants' safety is given utmost importance. Finally, justice refers to ensuring that the burdens and benefits of research are shared fairly without any form of discrimination or manipulation. These principles offer the researcher flexible tools to reflect on ethical decisions as they arise throughout the research process.
1. Introduction Qualitative research is often based on a Constructivist paradigm with the aim of an in depth understanding or exploration of phenomena or meanings [7,26]. To attain these aims, the nature of such research usually involves only a select number of participants with whom the researcher is often involved in face-to-face interactions during the data collection process. Participants are often asked to share personal information about themselves and their experiences through interviews, focus groups or observations [25,27]. These aspects of qualitative research imply that the researcher has to engage in ethical decisionmaking throughout the various stages of the research to ensure that the participants' rights are protected. In contrast, in quantitative research participants are more numerous and there is a much greater possibility for anonymity, and while ethical issues still need to be considered carefully, issues such as anonymity and confidentiality are often more straightforward to address. On the other hand, in some cases of qualitative research, particularly when exploring very specific phenomena and issues where the population in question is very small, or when using particular methods such as case study research where only one person is the focus of the study, the way the researcher takes ethical decisions is even more crucial to the research process. 2. Ethical principles applied to qualitative research The philosophical branch of ethics presents the researcher with various ethical frameworks upon which to base ethical decisions. Consequentialism, duty-based ethics, virtue ethics and the ethics of care are among those commonly used. However, moral pluralism can exist also within each of these frameworks. Using Principlism, ethical decision-making can be based on a set of principles irrespective of the ethical framework one adheres to [6,19]. The Belmont Report [24] is among the earliest attempts at formalising ethical principles in https://doi.org/10.1016/j.earlhumdev.2019.03.011
0378-3782/ © 2019 Elsevier B.V. All rights reserved.
biomedical and behavioral research. It came about as a reaction to several unethical research studies which were abusive to human participants. Examples of such research include Stanley Milgram's experiments, the Tuskegee Syphilis study and the Stanford prison experiment among others. Hughes et al. [19] list several other codes of ethics that have been developed in Europe which outline the conditions to abide by when conducting research with humans. The Belmont report focuses on the three principles of respect for persons, beneficence and justice. Instead of being invariable rules, these guiding principles are flexible tools, that aim to encourage debate and careful consideration of the ethical aspects of the research process, in such a way that the individuals' rights are safeguarded. Creswell [5] cautions against adopting a static approach when addressing ethical issues in research. Instead, these issues need to be addressed in the different phases of research, starting from the articulation of the research problem, and the research design [20] until the research is disseminated. Maintaining ethical standards has become a priority for most higher education and research institutions, whereby a researcher needs to attain ethical approval by an appointed Institutional Review Board (IRB) before commencing a research project with human participants [19,28]. The University Research Ethics Committee (UREC) is the IRB of the University of Malta. The sections that follow present the three principles identified in the Belmont Report and discuss their applicability to different stages in qualitative research. 3. Respect for persons This principle refers to treating those participating in the research process as autonomous beings who can form their own opinions and make their own choices. Treating individuals with respect entails the assurance that they are given sufficient information to make considered judgements, that their opinions are accepted and they are allowed the freedom to act upon these opinions. In the case of those individuals who
Early Human Development 133 (2019) 48–51
Best practice guidelines
are vulnerable and have limited autonomy because of age, illness or disability, their protection is at the heart of this principle.
Malta. If the research participants belong to a very small group and they can be identified easily, these strategies might not always be enough. In such circumstances, the dissemination of the study is usually restricted for a few years [25]. While the researcher promises participants confidentiality, in research carried out within a group, the researcher also needs to discuss how participants will address within-group confidentiality [17]. Often, at the start of a focus group, the researcher brings attention to this matter and elicits the participants' cooperation in ensuring that they will maintain confidentiality for each other. Promising confidentiality and anonymity also requires the researcher to have a plan on how to manage and store the data collected. The anonymised data should be stored securely and any identifiers removed from the data should be stored separately [4]. The consent form should also specify how long the data will be stored, in compliance with data protection laws such as the General Data Protection Regulation (GDPR) and who will have access to the data.
3.1. Addressing informed consent The main implication that this principle brings about for qualitative researcher is how to tackle the issue of informed consent. For consent to be valid [19] those invited to participate in the research should be provided relevant and sufficient information about the research goals, what participation entails and the extent of any risks involved. They should also be able to choose to participate in the research process voluntarily. Some research designs such as those that involve data collection at different stages even call for obtaining consent during every phase of the research (multi-stage consent). Obtaining consent from participants is often done by means of a consent form, signed by both the researcher and participant after the research process is explained verbally, in writing, or by a combination of both. Consent forms outline the conditions under which the research will be carried out and which the researcher will abide by. These include details about the study, duration and frequency of participation, the type of information collected, the right to refrain from answering specific questions, the right to withdraw from the study, how the participants' anonymity and privacy will be protected, how the data will be stored and who will have access to it, who is sponsoring the research, and that no deception is involved in the research process. All these aspects are negotiated when informed consent is explained. However, addressing them at the stage of obtaining the participants' consent is merely a first step. The researcher is accountable to adhere to these conditions throughout the research process as part of her ethical responsibility. In the case of vulnerable groups, such as minors, persons with disabilities or debilitating illnesses, consent is often sought from parents or guardians. Whenever possible, however, the researcher should still seek to attain the participants' assent [22]. For this purpose, the study is to be explained to these participants in a way that is accessible to their specific situation and they are asked to confirm that they accept to take part. Before seeking consent and assent, the researcher is to ensure that participants are protected, that the benefits of participating supersede any foreseeable risk of harm and that their participation in the research will not marginalise or disempower them further. These aspects are presented when discussing the principles of beneficence and justice in the sections that follow.
3.3. Reflecting on the researcher's impact Another way of respecting the research participants is to consider the power dynamic that the researcher's role can create [32] and to ensure it is not taken advantage of. Researchers are often associated with authority and this can create a power imbalance between researchers and participants [18]. For qualitative research, which involves in depth discussions with participants, it is crucial for the research process that the participants trust the researcher sufficiently to be able to share their thoughts and experiences. Thinking about the relationships the researcher wants to have with the research participants and how to help develop such relationships are some of the ethical considerations in research design [20]. Although it might not always be easy to anticipate how the research relationships will develop, the researcher can prepare herself. When the researcher positions participants as the experts [15] and that their experiences and thoughts are a significant contribution, this can level the research field. It also helps participants to share more freely without feeling judged, rather than withhold information that can be relevant to the study or be influenced by social desirability biases [8]. The researcher's age, gender, cultural background and other characteristics can also impact the research participants. While it is hardly possible to eliminate these cues from the process, the researcher's reflexivity allows her to remain sensitive to the social context of the research relationship [32].
3.2. Ensuring confidentiality and anonymity
3.4. Referring to participants
When explaining consent and assent, the researcher promises participants confidentiality and anonymity. Maintaining confidentiality implies that any information that is obtained during the research process is not revealed under any circumstances unless the participant grants permission. Since research is aimed at generating new knowledge, and disseminating it, offering complete confidentiality to participants is not entirely possible [30]. Data is thus anonymised so that the participants' identity is disguised, often through the use of pseudonyms, and any other identifiers are removed from the data. Ideally, the data is anonymised as early as possible, during the transcription process [4]. In qualitative research with few participants, presenting data about participants might compromise their anonymity even if pseudonyms are used. Morse and Coulehan [23] recommend several strategies to prevent this. Some of these strategies include presenting participant data in groups, changing identifiers, presenting only those participant characteristics that are relevant to the research, blurring recognisable faces in visual data, and re-reading the research from the participants' perspective before submitting it. Orb et al. [25] also recommend that when direct quotations are used, as is often the case in qualitative work, participants are asked to approve the use of the chosen quotations. The researcher also needs to be mindful of the context in which anonymity is promised. This is particularly relevant for a small country such as
Some ethical guidelines refer to research participants as ‘subjects’. It can be argued that another way to respect research participants is refer to them as ‘participants’ and treat them as such. The term ‘subjects’ often implies that they are subjected to the research process and research procedures. Instead, the use of the term ‘participants’ reflects an understanding of their agency to partake in the research process with the right to grant or withhold consent and information [5]. Research is carried out with participants rather than on them or to them. They are fellow human beings who deserve to be respected rather than seen only as a means to end. 3.5. Disseminating research Genzuk [10] also recommends that participants are consulted about how they want to be represented when reporting the research findings. Using pseudonyms is the common practice. One way of showing respect to the participants' story is to ask them to choose their own pseudonyms [1]. In some cases, the participants might even choose to be named. Giordano et al. [11] discuss the implications of offering non-confidentiality. In such cases, the researcher is ethically responsible for reflecting about the impact of this choice on the study and on the 49
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participants, and to help participants understand the implications of this choice. Ethically, researchers are expected to identify ways in which they can communicate the knowledge attained from research to the interested stakeholders. When disseminating the research, the researcher shows respect for the participants through ensuring that the findings are not fabricated or distorted, and that the way the data is interpreted is as free from biases as possible [5]. Another way in which participants' contribution in the research is valued is to offer them the possibility of reading the results [2,10].
to consider the termination of the research process. This might be a very difficult decision, particularly when the research timeline includes projected deliverables. Ideally, researchers have a group of peers or mentors with whom to discuss ethical issues as they arise. It is always prudent to err on the side of caution to ensure that no harm comes to the participants. 5. Justice The principle of justice refers to the equal treatment of all. In the research context, this implies that everyone has an equal opportunity to share the benefits and burdens of the research without any form of prejudice based on their characteristics such as age, gender, race, religion, socio-economic status, among others. This principle is based upon a long history of research participants being poor, black or prisoners, while the benefits were enjoyed by the privileged [24]. While this might not be the case nowadays, the researcher is nonetheless ethically obliged to ensure that her research does not create unfairness or discrimination in any phase of the research, but primarily with the selection of research participants, so that no group is excluded from research [28].
4. Beneficence The principle of beneficence refers to the researcher's obligation to ensure that the research participants' wellbeing is always safeguarded. This principle is often translated into two maxims, those of doing no harm and to do one's utmost to ensure that the benefits are maximised while the harms minimized. 4.1. Doing no harm Before pursuing a research initiative, the researcher is ethically obliged to weigh the expected benefits against the possible risks of harm. Apart from physical or psychological harm, there are other types of harm, such as legal and social harm, and the researcher is dutybound to consider these as well [24]. When the risks are too high, the benefits often have to be sacrificed. The researcher has to evaluate when the pursuit of benefits can be justifiable despite some risk involved. This should not be taken lightly, especially in delicate and complex situations where the risks cannot be easily quantified or are hidden. Before pursuing any course of action, the ethical research also tries to identify alternative ways in which the same benefits can be attained without the harms involved. Knowledge generated through high-quality methods of inquiry has both an extrinsic and an intrinsic value [19]. This extrinsic value lies in the benefits attainable for society. Shore [28] postulates that the principle of beneficence refers also to how the knowledge generated by research is translated into relevant actions for the community. However, the researcher's role is to reflect critically about what would be beneficial for the community and its context, as benefits can be relative.
5.1. Avoiding manipulation Orb et al. [25] explain that a distinctive feature of the justice principle is “avoiding exploitation and abuse of participants” (p. 95). Some research studies are aimed at improving the conditions for the disadvantaged and vulnerable. When identifying a research topic and research participants, the researcher is to ensure that participating in the research should not be a further burden on participants who are already afflicted. Participants should not be involved in research because it is convenient for the researcher or because they are easy to manipulate. In qualitative studies focused on specific subject areas, the population from which a sample is to be chosen might be limited in size. This might mean that for saturation point [9] to be reached during data collection, the researcher would need as many participants as possible. It would not be ethical to try to influences them or to exert undue pressures on them to keep them from withdrawing [21]. This principle also needs to be kept in mind when offering incentives to participate in a research study. While incentives might help the researcher access the targeted participants because they encourage participation [16], they can also become unethical undue influence if they are used to convince or coerce individuals to take part [12]. In some situations, particularly in psychological research, knowing the exact purpose of the study may influence participants. The BPS [3] distinguishes clearly between withholding some of the information pertaining to the research and explicitly providing incorrect information about the research. Participants cannot be deliberately misled without considerable justification. In fact, the use of deception is often unacceptable unless there are safeguards to ensure that it is done only when absolutely necessary and only if it can be ascertained that once the deception is revealed, participants will be not be negatively affected by it. Debriefing is the process of clarifying information about participating in a research and of removing any undesirable effects that the research has on the participants [29]. This often happens after data collection in any research study, but the researcher is specifically obliged to debrief participants when they are misled in any way because of the purpose of the research. Usually the researcher verbally informs participants about the nature of the research and provides any necessary further information. However, the format of the debriefing process can vary, depending on the nature of the study. Researchers often need gatekeepers to give them access to a specific population (such as when a service director grants permission to a researcher to contact the service users). It is the researcher's ethical duty to ensure that the gatekeepers are briefed about participant selection
4.2. Ensuring participant safety This weighing of harms against benefits needs to be sustained throughout the research process. Before embarking on the research project, the researcher is to ascertain that she has attained the relevant training and experience to conduct research. Such competencies would primarily safeguard participant wellbeing, and also ensure that the resource used to conduct the research can be translated into benefits [2]. Once participants are trusting the researcher, she is responsible for ensuring their safety. During a qualitative research process sharing lived experiences can be cathartic and empowering for participants, particularly if they feel that they are helping others [31]. However, participants may become distressed because the information they are asked to reveal makes them re-live traumatic or difficult experiences [25]. During data collection, the researcher might also learn that a participant is at risk of harming oneself or others. When this happens in a qualitative study, the researcher is well aware who the participant is and faces an ethical dilemma whether to break confidentiality and refer the participant for help or report the information, or else maintain her boundary as a researcher. It is the researcher's duty to have a back-up plan should such situations arise. One such practice could be the identification of support services where the participant can be referred to get help [2]. If the researcher becomes aware that the harms are outweighing the possible benefits attainable, it is her obligation towards the participants 50
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and all members of the selected population are given an equal opportunity to participate.
[3] BPS, Code of Human Research Ethics, British Psychological Society, Leicester, 2014. [4] A. Clark, Real Life Methods Working Papers: Anonymising Research Data, NCRM Real Life Methods Node, University of Leeds, Leeds, 2006. [5] J.W. Creswell, Research Design: Qualitative, Quantitative, and Mixed Methods Approaches, SAGE Publications, Los Angeles, 2009. [6] C. Ess, AoIR Ethics Working Committee, Ethical Decision-making and Internet Research: Recommendations From the AoIR Ethics Working Committee, Association of Internet Researchers, 2002 Retrieved March 11, 2013 from www. aoir.org/reports/ethics.pdf. [7] L. Finlay, ‘Rigour’,‘ethical integrity’ or ‘artistry’? Reflexively reviewing criteria for evaluating qualitative research, Br. J. Occup. Ther. 69 (7) (2006) 319–326. [8] R.J. Fisher, Social desirability bias and the validity of indirect questioning, J. Consum. Res. 20 (2) (1993) 303–315. [9] P.I. Fusch, L.R. Ness, Are we there yet? Data saturation in qualitative research, Qual. Rep. 20 (9) (2015) 1408–1416. [10] Genzuk, M. (1993). A Synthesis of Ethnographic Research. Occasional Papers Series. Center for Multilingual, Multicultural Research (Eds.). Center for Multilingual, Multicultural Research, Rossier School of Education. Los Angeles: University of Southern California. [11] J. Giordano, M. O'Reilly, H. Taylor, N. Dogra, Confidentiality and autonomy: the challenge (s) of offering research participants a choice of disclosing their identity, Qual. Health Res. 17 (2) (2007) 264–275. [12] R.W. Grant, J. Sugarman, Ethics in human subjects research: do incentives matter? J. Med. Philos. 29 (6) (2004) 717–738. [13] V. Grech, WASP - write a scientific paper course: why and how, J Vis Commun Med. 40 (3) (2017 Jul) 130–134, https://doi.org/10.1080/17453054.2017.1366825 (Epub 2017 Sep 19). [14] V. Grech, S. Cuschieri, Write a scientific paper (WASP) - a career-critical skill, Early Hum. Dev. (2018), https://doi.org/10.1016/j.earlhumdev.2018.01.001 Jan 17. pii: S0378-3782(18)30005-7. doi. [15] S. Grover, Why won't they listen to us? On giving power and voice to children participating in social research, Childhood 11 (1) (2004) 81–93. [16] E. Head, The ethics and implications of paying participants in qualitative research, Int. J. Soc. Res. Methodol. 12 (4) (2009) 335–344. [17] C.M. Heary, E. Hennessy, The use of focus group interviews in pediatric health care research, J. Pediatr. Psychol. 27 (1) (2002) 47–57. [18] S.D. Horner, Using focus group methods with middle school children, Research in Nursing & Health 23 (6) (2000) 510–517. [19] J. Hughes, D. Hunter, M. Sheehan, S. Wilkinson, A. Wrigley, European Textbook on Ethics in Research, (2010) (Publications Office of the European Union). [20] J.A. Maxwell, Designing a qualitative study, in: L. Bickman, D.J. Rog (Eds.), The SAGE Handbook of Applied Social Research Methods, SAGE Publications Inc, Los Angeles, 2008, pp. 214–253 2nd ed.).. [21] V.A. Miracle, The Belmont report: the triple crown of research ethics, Dimensions of Critical Care Nursing 35 (4) (2016) 223–228. [22] M. Morgan, S. Gibbs, K. Maxwell, N. Britten, Hearing children's voices: methodological issues in conducting focus groups with children aged 7-11 years, Qual. Res. 2 (1) (2002) 5–20. [23] J.M. Morse, J. Coulehan, Maintaining confidentiality in qualitative publications, Qual. Health Res. 25 (2) (2015) 151–152, https://doi.org/10.1177/ 1049732314563489. [24] National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, Bethesda, Md, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, (1978) (Superintendent of Documents). [25] A. Orb, L. Eisenhauer, D. Wynaden, Ethics in qualitative research, J. Nurs. Scholarsh. 33 (1) (2001) 93–96. [26] J.G. Ponterotto, Qualitative research in counseling psychology: a primer on research paradigms and philosophy of science, J. Couns. Psychol. 52 (2) (2005) 126. [27] N. Sangasubana, How to conduct ethnographic research, Qual. Rep. 16 (2) (2011) 567–573. [28] N. Shore, Re-conceptualizing the Belmont report: a community-based participatory research perspective, J. Community Pract. 14 (4) (2006) 5–26. [29] F.E. Tesch, Debriefing research participants: though this be method there is madness to it, J. Pers. Soc. Psychol. 35 (4) (1977) 217. [30] R. Wiles, G. Crow, S. Heath, V. Charles, The management of confidentiality and anonymity in social research, Int. J. Soc. Res. Methodol. 11 (5) (2008) 417–428. [31] R.L. Woodgate, P. Tennent, M. Zurba, Navigating ethical challenges in qualitative research with children and youth through sustaining mindful presence, Int J Qual Methods 16 (1) (2017) 1609406917696743. [32] L. Yardley, Dilemmas in qualitative health research, Psychol. Health 15 (2) (2000) 215–228, https://doi.org/10.1080/08870440008400302.
5.2. Appreciating diversity Further applicability of the principle of justice relates to the researcher's ability to bracket her value systems to ensure an attitude of openness towards the participants' opinions and personal characteristics [31]. Often the researcher's and participants' values differ [2]. The researcher's reflexivity and awareness of differences, including a sensitivity to cultural differences [28] allows her to produce work that is free from biases, and that does justice to the participants' actual experiences, especially when the research is carried out with diverse groups. 6. Conclusion Finlay [7] argues that the positivistic criteria of reliability, validity and generalisability are not applicable to qualitative research. Instead, when evaluating qualitative research, it is required that researchers “move beyond criteria focused solely on procedural rigour and confirmability and, instead, apply ethical, literary and creative dimensions” (p. 322). Finlay [7] proposes caring as one of these dimensions. This encapsulates the researcher's sensitivity towards the participants' safety, her ethical integrity and reflexivity about the research process. Various ethical frameworks exist, nonetheless there are no universal ethical rules. Instead researchers have to consider “doing the right thing, for the right reason, in the right way, at the right time” ([6], p. 4). Principlism can be criticised because the ethical principles can be too abstract, or not sufficiently explicit and thus, some ethical issues may be overlooked or ethical decision making might not be consistent [28]. Despite these issues, the principles of respect for others, beneficence and justice presented are sufficiently flexible tools which the researcher can use to reflect ethically about her research and make ethical decisions. This chapter argued that the researcher's ethical accountability does not end once she goes through the formal procedures required by an IRB. It is her responsibility to be mindful of and address ethical issues as they arise through the research process, acting with integrity and ensuring that the principles of respect for others, beneficence and justice are withheld. Acknowledgments The inspiration for this series of papers arises from the international Write a Scientific Paper course (WASP - http://www.ithams.com/ wasp). [13,14]. Conflict of interest statement There are no known conflicts of interest associated with this publication and there has been no significant financial support for this work that could have influenced its outcome. References
Lorleen Farrugia, Department of Psychology, University of Malta, Msida, Malta E-mail address: [email protected].
[1] R.E. Allen, J.L. Wiles, A rose by any other name: participants choosing research pseudonyms, Qual. Res. Psychol. 13 (2) (2016) 149–165. [2] T. Bond, Ethical guidelines for researching counselling and psychotherapy, Couns. Psychother. Res. 4 (2) (2004) 10–19.
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