Keywords

1 Introduction

Evidence from nursing research is underpinning professional decision-making in nursing. Increasing numbers of nursing researchers investigate a wide range of aspects of nursing practice and their impact on stakeholders. Addressing research ethical concerns is an important element of preparing for the conduct of research, and research ethics committee approval is frequently required for any research activity in nursing. As this chapter is going to argue, focusing simply on the requirements for research ethics approval by research ethics committees alone may not do justice to the ethical challenges arising in a research project. Instead, considering research ethics from the point of view of feminist ethics can add substantively to the understanding of ethical concerns in research, not just in nursing, but also more generally, not least through more in-depth consideration of what Judith Preissle (2007) describes as a “concern with relationship, particularity, constraint and inclusion” (p. 519).

Feminist ethics provides important conceptual resources for understanding research ethical concerns in nursing. Rather than endorsing a specific feminist approach, the potential significance of various prominent concepts from feminist ethics will be explored for the context of research ethics and a feminist interpretation of core concepts and concerns of research ethics will be provided. The chapter begins by considering the professional and organisational aspect of research ethics, with a view to how considerations of power need to be taken into account when understanding the development and current forms of research ethics review. Then the question of the vulnerability of research participants will be discussed, drawing on feminist reflections on vulnerability, arguing for a more differentiated understanding of participant vulnerability that takes into account individual participant characteristics and contextual factors. This is followed by a reflection on research participants’ agency, and it will be argued that informed consent and confidentiality are important, but also significantly limited expressions of agency in traditional research ethics; the potential of participatory research to address concerns around participants’ agency will be explored. Care ethical considerations will then be used to understand the ethical concerns underpinning the management of risks and benefits in research, as well as the duties of researchers following the completion of the research. And finally, the researcher-participant relationship will be interpreted through the lens of relational ethics and trustworthiness. This includes consideration of conflict of interest and dual roles in research but will also address the embeddedness of the research activities in the relationship between researcher and participants. This chapter aims to show that feminist ethics provides concepts that elucidate the ethical responsibilities of researchers in a more comprehensive way that shows the limitations of mere adherence to research ethical requirements as set by research ethics committees.

2 Power in the Ethical Review of Research

The concept of power helps elucidate ethical underpinnings but also the ethical limitations of contemporary ethics review. Research ethics was initially conceived as corrective to unchecked professional power but wields its own institutional power as a “bureaucracy of virtue” (Bosk 2007). Traditionally, ensuring ethical practice in research was considered the sole responsibility of the (then primarily male) professionals who were involved in the conduct of research. However, it became clear that professionals did not always conduct research in the best interest of their participants and at times abused their professional power. According to Lukes (2005), power can be conceptualised as capacity or as domination, as mutualistic or adversarial, and as collaborative or conflictual. However, in the traditional research setting, where the participant is seen as a passive recipient of the research interventions, the power of professionals can be conceptualised with Lukes and Boser (2007) as dominance in a dyadic relationship that allows them to influence other people’s actions. The most prominent cases of research misconduct in professional healthcare relationships involved populations who were socially marginalised, disabled, or in positions of dependency, such as poor African Americans suffering from syphilis in the Tuskegee experiments (Reverby 2009), or children with cognitive disabilities at risk of infection with hepatitis in the Willowbrook experiments (Rothman 1982; Krugman 1986).

Professional guidance documents were developed in response to such abuses of research participants. A first international statement on research ethics, specifically in response to the atrocities of the Nazi medical experiments, was proposed in 1949 with the Nuremberg code (The Nuremberg Code 1949). The Nuremberg Code outlined important conditions for ethical research and established the principle of informed consent as an essential requirement. In 1964, the first edition of the Helsinki declaration was issued by the World Medical Association (World Medical Association (WMA) 2018) outlining detailed ethical principles for medical research as binding in an international context. The Belmont Report (The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1979) in the United States in 1979 was partly a response to concerns arising from the abuses in the Tuskegee and Willowbrook experiments, outlining core principles of research ethics that were later echoed in Beauchamp and Childress’ work (Beauchamp and Childress 2012). Other large international organisations followed with their own ethics codes, including the Council for International Organisations of Medical Sciences (CIOMS) (2016) guidelines for international research. Professional organisations in the healthcare professions also implement standards of ethical practice for their members that include the ethical conduct of research.

Research ethics codes and research ethics committees can be understood as an institutional response to a problem of the abuse of professional power. Research ethics committees (RECs) or institutional review boards (IRBs) are formal structures that review research proposals before research activities are initiated. RECs are multidisciplinary bodies that bring together a mix of professionals and laypersons with different experiences and levels of seniority to provide ethical peer review. The inclusion of a substantial number of lay members, that is, non-scientists and non-affiliated members, is often considered particularly important, due to the hope that their presence might allow addressing biases and blind spots and help break open entrenched institutional power structures (Jones et al. 2008; Solomon 2016).

Their implementation meant that the trust in the judgment of individual professionals was replaced with reliance on scrutiny by an external review body that brought together a multitude of perspectives and was independent of the research to be reviewed. RECs were first implemented in clinical contexts to review the risks and benefits of potentially harmful clinical interventions and to ensure that research participants were adequately informed about what their research participation entailed. Over time, health research employing social science methodologies, as is common in nursing research, also became subject to research ethics review.

The emergence of formalised review structures has received criticism with regard to its institutional power. It gives power to new actors and evolving bureaucracies that define what counts as a legitimate conceptualisation of knowledge, ethical issues and appropriate solutions, leading to the potential silencing, marginalisation or delegitimisation of incompatible approaches (Ackerly and True 2008). For example, application forms for RECs often require the description of research activities in a format that is designed to capture information on randomised controlled trials rather than on qualitative participatory research, where research activities are less predictable and where risks are less quantifiable. Lukes states that “an IRB will typically operate from a “power as dominance” perspective” (Lukes 2005, p. 1063). Accordingly, the power wielded by research ethics bureaucracies has been criticised as “ethical imperialism” (Schrag 2010) or even as “systemic bullying” of researchers (Carr 2015). As feminist theory has argued, the dynamics of power and pervasive asymmetrical power relationships in professional and institutional settings are a feminist issue, not just because personal power is wielded by predominantly male professionals, but also because bureaucracy can be understood “as a structural expression of male dominance” (Ashcraft 2001, p. 1301) which embodies and perpetuates underlying ideologies, “revealing persistent patterns of dominance and subordinance … that parallel power relations between men and women” (Ferguson 1984, p. x). As Lukes argues, in research ethics there is a complex intersecting bureaucratic structure of power as dominance: “the IRB has ‘power over’ the researcher, the power to withhold approval of research projects…” (Lukes 2005, p. 1063); also regulations exert power over the ethics committee, and the researcher holds power over participants.

The institutional positioning of RECs makes their decisions difficult to challenge by individual researchers, even though ethics committees themselves do not see it that way (Klitzman 2011). Especially in the social sciences, many have decried the implementation of mandatory REC review as a regulatory overreach that imposes undue limits and burdens on researchers that are disproportionate to the risk to research participants (Schrag 2010; Dingwall 2008; Dyer and Demeritt 2009; Haggerty 2004; Schrag 2009, 2011). It has been suggested that RECs judge diverse research by means of a certain general understanding of what constitutes knowledge and good research, described by Boser as “postpositivist epistemological assumptions of a distanced objectivist research stance” (Boser 2007, p. 1060). Traditional research ethics often relies on an understanding of knowledge that is divorced from concerns about its application. RECs typically rely on a set of fixed rules and requirements, embodying “the principled orientation to research ethics” (Preissle 2007, p. 519). Application forms used by committees are often modelled on what is taken as the paradigmatic case of clinical trial research in medicine that may not match the qualitative approaches of social science research in health, especially not participatory research (Wilson et al. 2018). Feminist theory has highlighted the risks of relying on generalised knowledge and the importance of doing justice to the particular and unpredictable. As Alderson and Morrow state, following the postmodernist Baumann: “We may be blindly obedient to rules instead of also carefully feeling a way forwards through unpredictable, ambiguous, negotiated interactions” (Alderson and Morrow 2006, p. 413).

Nursing research, unlike medical research, has avoided prominent research ethics scandals. However, that does not mean nurses have been ethically faultless regarding their role in research in the past; nurses were, for example, actively involved in research activities in Tuskegee and Willowbrook. It is essential that nurses be aware of their position of professional power vis-à-vis many participants as representatives of the healthcare service and reflect on their contribution to sustaining such power differentials, for example by making efforts to share decision-making power (Henderson 2003). Nurses have the responsibility to conduct their own research ethically but also to avoid potential complicity with ethically problematic research carried out under the guidance of other professions, even though potentially problematic interprofessional power dynamics might be in play in such situations. Regarding the confrontation with the institutional power of research ethics committees, nursing research generally falls under the remit of healthcare RECs but often employs qualitative social science investigative methodologies which often do not conform to the model of clinical trial research on which healthcare REC submission forms tend to be modelled. Accordingly, their engagement with research ethics committees may at times reflect some of the conflicts that other social science researchers have noted (Schrag 2010) with regard to the imposition of requirements that may not adequately reflect the practical characteristics of the research conducted in nursing.

3 The Vulnerability of Research Participants

Vulnerability is an important research ethical concern, comparable to its role in the delivery of healthcare. Nurses are sensitised through their training to paying attention to the vulnerability in their healthcare practice, not least through their professional obligations of care and advocacy (Gaylord and Grace 1995; MacDonald 2007; Hanks 2008). Vulnerability in research ethics is linked less prominently to advocacy for participants’ rights—although some research approaches, such as participatory research make that link—and more to the protection of research participants. Most research ethics committees require the assessment of the vulnerability of research participants. The demands generally increase substantially if participants are considered to be members of a vulnerable group, such as children, pregnant women, persons with mental illness, persons who are socially marginalised, prisoners or persons in dependent relationships. Often RECs see their role as preventing participants from entering problematic research settings in the first place, or otherwise focusing on increasing participants’ awareness of their rights.

Despite being such a central concept in research ethics, vulnerability as a concept has only received more careful ethical attention in recent years, especially in feminist literature. Levine et al. (2004) problematises the limitations of the concept of vulnerability and the associated risk of stereotyping of participants when applying vulnerability as a blanket concept to persons based on their membership of a particular group. Hurst analyses vulnerability in terms of “an increased likelihood of incurring additional or greater wrong” (Hurst 2008, p. 194). Luna (2009, 2019) differentiates this position further and argues for understanding vulnerability in terms of “layers, not labels”, where multiple layers of vulnerability might combine and compound each other, or where particular strengths in one layer may help mitigate the vulnerability in another layer. She gives the example of vulnerability associated with being a woman, which may be compounded or mitigated to some extent by the rights and protections available to women in different societies, for example with regard to reproductive rights, but also with different levels of privilege associated with certain social positioning. Luna points out that the blanket use of vulnerability taxonomies can lead, paradoxically, to disempowering participants whose resilience may be underestimated. Working adequately with the notion of vulnerability, according to Luna, would involve identifying which layers of vulnerability might apply in a particular case and what factors might trigger a vulnerability. Luna also highlights what is sometimes called “pathogenic vulnerability” (Luna 2019), insofar as layers do not simply add up in a straightforward way, but certain conditions that trigger vulnerability in one situation might exacerbate others and then cascade through the layers. An example that Luna gives is of an older person’s loneliness that might lead to a variety of further cascading harms, such as psychological harm, lack of appetite and activity, resulting in greater general frailty. Applying the concept of vulnerability in research ethics from a feminist point of view, therefore, means paying attention to how the particular context, content and methodology of the research and the specific characteristics of research participants might interact and whether there might be any cascading negative effects resulting from the research.

Applying Luna’s concept of layers of vulnerability also means to balance potential harms of inclusion versus exclusion carefully. In the field of clinical trials, it is acknowledged that the exclusion of children from participation in research for the purpose of protection from research risks is itself associated with significant subsequent risks: without systematic large-scale trials, healthcare interventions that may be deemed necessary for children’s healthcare remain insufficiently evidence-based. Researchers in paediatric research have long been concerned about the complexity of requirements for trials with children and the “draconian oversight” by research ethics committees (Joseph et al. 2016) which may make their inclusion more difficult to achieve. Similarly, clinical research involving pregnant women has been virtually non-existent, due to substantial vulnerability concerns, despite the need, argued for by feminist authors, to provide evidence-based healthcare for many pre-existing conditions in pregnant women (Baylis and Kaposy 2010; Lyerly et al. 2008).

In qualitative research, the exclusion of participants from research due to vulnerability leads to a potentially problematic omission of stakeholder views on issues affecting the most vulnerable. This might result in a potentially biased narrative on issues affecting these members. This lack of voice is particularly concerning from the advocacy perspective in nursing which is focused on giving a voice to, and showing respect for, experiences that are otherwise left unheard and unrepresented (MacDonald 2007; Hanks 2008; Smith 2008). Carter captures the tension between vulnerability protection and exclusion in her statement, regarding children’s research, that “the discourse of child vulnerability competes with the discourse of child participation and involvement” (Carter 2009, p. 858). This concern is also captured by the slogan “nothing about us without us”, which is frequently used in disability rights activism, linked to the Convention on the Rights of Persons with Disabilities (CRPD) (2008). Concerns related to participation and empowerment will be discussed in further detail in the following section.

4 The Autonomy and Agency of Research Participants

Concerns regarding the agency of research participants are captured in traditional research ethics primarily through requirements regarding informed consent. Autonomous decision-making is perceived as a core expression of human agency, and informed consent is generally seen as the most important way of realising and documenting autonomy in research. The assumption is that giving persons sufficient information about what research entails and offering them uncoerced choice regarding participation is a meaningful way of enabling them to exercise their agency.

Informed consent, understood traditionally, requires meeting a set of conditions. These conditions apply equally in the context of research and healthcare practice. Nurses are familiar with the practice of informed consent in healthcare. The difference between consent in research and healthcare contexts is that the participant’s interest in research participation is usually different from their interest in obtaining healthcare. According to Beauchamp and Childress (2012), there are six conditions of informed consent that need to be met. First, there are two preconditions of consent that need to be in place: (1) participants should have the capacity to consent, which includes the cognitive and emotional ability to understand information, reflect on their preferences and make decisions in light of their preferences; (2) participants should not experience any coercion in their decisions to participate, which could involve explicit pressures to participate or more subtle psychological influence, across what is sometimes called the “spectrum of coercion” (Szmukler and Appelbaum 2008). Then there are the so-called information elements. This includes (3) provision of relevant information that the participants require to make a well-grounded decision, including information on what research participation entails, and what risks and benefits may arise from participation. This is closely related to (4) ensuring participants’ understanding, both through presenting that information in an accessible manner to participants, where necessary, specifically tailored to their information-processing abilities, and through providing opportunities to check understanding and address any questions and emerging gaps in understanding. Finally, consent will be achieved through (5) the participant’s own active decision to participate, ideally following their careful deliberation on the information provided; and (6) the authorisation for the researcher to go ahead with research activities, either through completing a written informed consent form that usually contains various items that the participant agrees to, or through oral consent. It is assumed that by going carefully through these six conditions, it can be ensured that the participant’s decision is truly their own.

Closely related to consent, confidentiality is another core requirement of research ethics that is generally considered to be linked to the participant’s autonomy and agency. Confidentiality requires that participants’ contributions are kept confidential and will only be accessible to those who have explicitly been authorised by the participant to access the information. Meeting confidentiality requirements means giving the participants control over who can receive information relating to their research contributions. Data protection legislation, as covered by the European General Data Protection Regulation 2016/679 (GDPR), embodies this focus on individual control of the use of personal data through its primary reliance on consent as grounds for data processing.

However, understanding autonomy and agency as residing fully in the individual who makes the decision has been criticised by feminist authors as misunderstanding the relational nature of human decision-making and ignoring the realities of shared social life. The concept of “relational autonomy” (Mackenzie and Stoljar 2000) has been proposed as a counterpoint to an understanding of autonomy that centres around a thoroughly individualised idea of psychological self-sufficiency. The value of this concept has been recognised in nursing ethics (MacDonald 2007, 2002). It has been argued in the feminist literature on relational autonomy that autonomy should not be understood to be as something purely internal that happens in a person’s head (Oshana 2006). Instead, autonomy is viewed as the “socially constituted capacity” (Mackenzie 2008) of a person that is intimately bound up with their social context. The latter recognises that person as someone who has the authority to make decisions and thereby facilitates their autonomous engagement with options that are actually available in the world. In nursing, the realities of patients’ embeddedness in social structures that may help or hinder them in forming and expressing their views are on constant view in care situations.

What the concept of relational autonomy highlights for research ethics is that the mere fact of including an informed consent step in the research process is not going to guarantee the participant’s substantive agency. Not only would it be important to involve participants actively in consent throughout their participation, as captured in the notion of “process consent” (Dewing 2007; McKeown et al. 2010). To achieve genuine agency, the participant must also find themselves in a situation where they feel they have options and where they would see themselves to be in a position to be heard. Informed consent as currently practiced, with a primary focus on participants reading and signing informed consent forms, does not seem to facilitate this more demanding and more situated understanding of agency.

Social positioning can be seen as a further impediment to a genuine agency, due to the impact of power asymmetries between researcher and participant (Boser 2007). Alderson and Morrow argue that for ethical practice it is essential to take steps to remedy these asymmetries: “Research ethics involves the transfer of as much information and control as possible from researchers to participants, who may be far less confident and knowledgeable than the researchers” (Alderson and Morrow 2006, p. 8). However, existing social power relationships may be entrenched and not so easily remedied through once-off well-meaning actions by researchers, especially when the choices available to participants in the research situation are already structurally limited for participants to a mere “yes” or “no” to participation. In addition, the options for participants may become even more limited due to requirements of the research ethics system itself, as Boser points out: “application of the conventional IRB framework in reviewing the ethics of participatory inquiry can itself harm human participants in such projects by limiting the participants’ field of choices” (Boser 2007, p. 1060), especially when “participatory researchers … struggle to translate practice informed by values of shared power to the IRB as audience” (Boser 2007, p. 1065).

While researchers are generally the ones interpreting and writing up the research results, as Preissle states “the writing itself, who writes whom, creates imbalances of power and an inevitable ‘othering’ of participants” (Preissle 2007, p. 525), there is at the same time risk in labelling research participants as always powerless and researchers as always more powerful. In reality, the power dynamics characterising the researcher-participant relationship are generally more complex, as Karnieli-Miller et al. (2009) point out in their analysis of the mutual dynamics of power within qualitative research relationships. In their view, traditional research assumes that “the division of roles between researcher and participant is dichotomous, unequivocal, constant, uniform, and predetermined … the researcher [is seen] as a neutral observer who objectively examines various human phenomena” (Karnieli-Miller et al. 2009, p. 280). In contrast, once power dynamics are taken into account, especially in the process of qualitative research, participants have many opportunities to shape the research process and research results by deciding what to share, withhold or distort. Accordingly, “[t]he relationship changes according to the researcher’s personality, world view, ethnic and social background, perceptions derived from the researchers’ [sic] professional discipline, the qualitative paradigm, the theoretical base of the research, the type of the research and its goals” (Karnieli-Miller et al. 2009, p. 280). To address the resulting hermeneutic challenges, attention has been given in qualitative research to creating opportunities to balance the power of interpretation, for example by exploring fully collaborative methodologies with the participant as co-researcher (Groot et al. 2019), or by asking participants to review not just transcripts of interviews, but the interpretations drawn from them.

Participatory research is one prominent methodology for research that aims to achieve the empowerment of research participants. It is frequently chosen as a research methodology by feminist researchers and others whose research is sensitive to giving voice to marginalised or underrepresented individuals. Participatory research is built on the assumption that participants need to be considered experts in the issues that affect them. It is designed to allow participants to take an active and creative role throughout the conduct of research, including identifying research goals on the basis of their needs and lived experience, being actively engaged in the process of interpretation, and in developing meaningful dissemination opportunities (Wilson et al. 2018; Flicker et al. 2007; Banks et al. 2013). Instead of understanding participants’ agency simply to be a matter of informed consent, that is, primarily relevant at the participants’ entry point to research participation, participatory research aims to ensure that participants’ autonomy and their agency are respected and facilitated throughout the entire process of research. Accordingly, in this research methodology, research is understood as a practice rather than an instrument for the creation of objective knowledge outcomes; it is focused on the process of participatory knowledge creation and social change as a way of respecting and empowering participants (Preissle 2007).

5 Care for Research Participants

It is generally acknowledged that researchers have a duty of care towards participants, similar to the duty of care that healthcare professionals have towards their patients. However, the conceptualisation of this duty of care in traditional research ethics is conceived quite narrowly and differs substantially from its conceptualisation in feminist research ethics. In traditional research ethics, the duty of care primarily refers to the duty to protect the research participant from harm. Accordingly, a core obligation in research ethics is to identify potential risks to participants’ well-being and focus on risk-prevention and risk-mitigation strategies. This is understandable in light of previous abuses of participants in research that endangered the lives and well-being of participants, such as in the Tuskagee or Willowbrook studies mentioned earlier. However, this narrow focus on risk is potentially problematic because the focus on risk prevention leaves out the importance of other values in research, such as empowerment, solidarity or even just grasping the richness and real-life complexity of the phenomena under investigation. It may also lead to discouraging forms of research that do not conform to highly standardised and predictable approaches, especially methods where risks are less clearly predictable, such as in participatory action research, creative methodologies, or group- or community-based research.

In a feminist approach to research ethics, thinking about the duty of care demands engagement with the concept of caring and care ethics. As discussed in previous chapters, care ethics has its origins in the 1980s, when it was developed in opposition to traditional universalist morality (Gilligan 1982; Noddings 1984). What characterises care ethics is its deeply relational understanding of moral thinking. When the research relationship is understood as a caring relationship it requires from the researcher more than fairness and following general principles. Care ethics draws attention to the uniqueness and particularity of each participant, the need for empathy and holistic understanding of the participant’s perspective, care for their well-being and development, flexibility in adjusting to their individuality, and a certain degree of mutuality in the relationship of researcher and participant. Even if research interactions require a certain level of uniformity, according to the care ethics perspective, researchers have the responsibility to create research relationships in which participants are not treated like numbers and in which space is given, however limited, to establishing a genuine encounter between researcher and participant.

The duty of care extends not just to the treatment of the participant within the research interactions themselves, but also extends beyond the research encounter. As already indicated in the reflections on power above, the researcher’s work with the research data provides opportunities to exert power in the process of interpretation and representation of results. Preissle refers to this as the “Ethics of Representation”, which she describes as “the good or ill that results from how participants are represented in publications, presentations and other reports of research. … Will research participants be distressed when they learn how they are described, characterised and interpreted? … Will other people … face difficulties in their lives because of how those who share their attributes are represented?” (Preissle 2007, p. 525). Feminist research ethics of care realises the sensitivity of the choice of representations and the value that participants assign to such representations.

The researcher’s duty of care to participants also includes post-research responsibilities, both for individuals and affected communities. It is becoming increasingly common for researchers to see their role not just as obtaining research data from individuals and communities, but as engaging with them after the completion of the research. Most immediately, that involves debriefing, in the sense of providing participants with opportunities of reflecting on their experience of research participation. This is traditionally considered mandatory for any research involving the deception of participants (Miller et al. 2008) but can also be important for other types of research (McShane et al. 2015), for example, research that involves longer term engagement with the research activities. In addition, research projects may also provide their participants with the research results and mark the completion of research by honouring the contribution from their participants (Naidu and Prose 2018).

In addition, in light of the concept of relational autonomy, it is also important to consider the individual as a member of groups and communities, either their local communities or other groups. Accordingly, researchers also have the obligation to consider how their results might affect more than the individuals that they have included in their research and take into account the perspectives of those individuals and communities themselves (Groot et al. 2019). For example, there have been cases especially in ethnographic research where communities felt stigmatised after research had been published about their locality or subculture. This can be especially risky when such groups are already marginalised. For example, nursing research investigating the health behaviours of marginalised groups in community settings would need to reflect on whether their results might potentially be used to discriminate against these groups. Researchers have the ethical responsibility to conduct and frame their research in a way that does not leave their results open to misunderstandings or misuse.

6 Trust and Relational Ethics in Research

The ethical importance of relationship factors has been addressed as a core feature of feminist ethics in the preceding discussion. In the following, the risks to the relationships between researchers and participants will be explored with regard the question of trustworthiness. Trust and trustworthiness have been drawn on as a crucial ethical concept in moral theory (Baier 1986) and healthcare ethics (O’Neill 2002). Nursing ethics codes frequently include a reference to trust, and there has been increasingly widespread worry about a crisis of trust in experts and government in contemporary society (O’Neill 2018), including in some aspects of healthcare provision, such as vaccines (Attwell et al. 2017).

One core element of trustworthiness is expertise and professional competence. This is particularly essential for healthcare provision. In health research, the professional expertise from nursing that the researchers bring to the research situation can be instrumental in ensuring ethical research. For example, nursing researchers in dementia who interact with persons with dementia will need to draw on their professional competence in engaging persons with dementia in conversation, identifying their mental state and capacity to participate, or addressing difficult topics sensitively (McKeown et al. 2010). In addition, the researchers also need scientific competence that allows them to conduct valid research (Emanuel et al. 2000).

Trustworthiness in research relationships also requires that the researcher shows a noticeable interest in fulfilling their ethical obligations towards the research participant. Research relationships can be understood partly as asymmetric relationships in which specified research roles and dynamics of power and privilege underlie the researcher’s specific obligations of care and protection towards the participants, but also partly as relationships where researcher and participant meet as equals where obligations are derived from mutual respect. The more differences there are between the researcher and the participant, the more challenging it may appear to researchers to do justice to the requirements of equality. Preissle points out that traditional research roles might encourage over-identification with the role of detached expert, forgetting that participants also need to be engaged as fellow human beings. Feminist research ethics instead poses a “challenge to the assumed division between who is the researcher and the knower and who is the researched or known” (Preissle 2007, p. 524). Treating participants not primarily as data sources, but as human beings whose experience and interest matter is likely to convey the element of respect and moral obligation that is one element of trustworthiness.

In addition, trustworthy researchers also need to ensure that any potential divergences in expectations regarding the researcher-participant relationship are proactively addressed so that the participants’ expectations align sufficiently with the researchers’ role. For example, the therapeutic misconception (Appelbaum et al. 2004) is known to be a particularly common challenge in health research, where participants who encounter healthcare professionals in the research role expect them to continue in a role in which the healthcare needs of the participants are the primary concern. However, research interests are frequently focused primarily on gaining new knowledge rather than directly improving the research participants’ health status. Accordingly, it is essential for nursing researchers to be aware of these potential differences in expectations and address them proactively in the establishment of the research relationship. This includes taking into account the potential diversity of implicit expectations and interests of participants (Horng and Grady 2003) and taking these seriously, despite the difficulties that might entail (Wilson et al. 2018).

The potential lack of alignment in expectations and interests in the research relationship can also manifest itself in dual roles. Dual roles exist when the researcher embodies different roles simultaneously that are significantly different in goals and purposes from the research relationship. This might lead to potentially complex sets of divided loyalties towards participants and towards employers (Nutt 2002a). One particular concern for nursing research are relationships that might exert implicit pressures on the participant to participate in research. For example, if the researcher is also a healthcare provider of the research participant (Judkins-Cohn et al. 2013), an educator (Loftin et al. 2011) or a peer potentially working alongside participants in insider research settings (Bonner and Tolhurst 2002), the participant may be incentivised to participate in research in order to preserve or enhance the quality of these other relationships. In addition, there can be more subtle consequences arising from engaging in research with dual roles, as Nutt and Bell (Nutt 2002b) point out with regard to a social worker’s research experience with foster parents. Participants may tailor their research contributions to the professional’s role; researchers may respond to participants on the basis of their professional experience, or they may potentially alienate participants by presenting themselves in their research role as more naïve with regard to the professional realities on the ground than they are.

A related, particularly problematic ethical concern regarding the researcher-participant relationship is the potential for exploitation. Traditionally, exploitation has been identified primarily with regard to global clinical trials research where research participants from lower income countries may join trials as a means to obtain income or access treatment that would otherwise not be available to them, in return for carrying the unknown risks of research participation. A core problem is the exploitation of the vulnerable position of these participants that allows members of developed countries not to carry that burden themselves (Benatar 2002; Hawkins and Emanuel 2008). Even outside the global context, research with marginalised communities may raise similar issues where burdens for participants may contrast with benefits for researchers. For example, conducting research with trauma survivors comes with many risks for participants and needs to be carefully designed to navigate and respect the complex vulnerabilities and harms experienced by survivors, including the avoidance of re-traumatisation (Newman et al. 2006).

And finally, trustworthy researchers also need to be accountable to participants and the communities that were involved in or could be affected by their research. Debriefing and other forms of knowledge transfer within and after research activities can function as accountability measures (Naidu and Prose 2018). Active stakeholder consultation activities and other forms of knowledge exchange during research facilitate accountability, insofar as they make the knowledge creation process more accessible and transparent for stakeholders. “Member checking”, understood as validation of research results by participants, is considered particularly important not just for ensuring scientific validity, but also for doing justice to the co-constructed nature of knowledge in qualitative research (Birt et al. 2016). It has, however, been argued that member-checking activities are themselves dynamic social interactions that are not just straightforwardly confirming or negating the validity of research results, but instead reflect active navigation of social dynamics and negotiations between participants and researchers where the initial positioning of expert and layperson may be re-enacted (Madill and Sullivan 2018).

7 Conclusion

As this chapter has shown, feminist ethics provides valuable insights into ethical challenges encountered in research. This chapter aimed to combine core concepts from traditional research ethics with insights from feminist ethics to inform an ethically sensitive practice for nursing research. The discussion included reflections on ethical challenges associated with the role of power in research ethics review, understanding the vulnerability of research participants, engagement with agency and autonomy in research within and beyond informed consent, responsibilities associated with caring for participants, and the role of trustworthiness in research relationships. It has been shown that drawing on conceptual resources from feminist ethics may help achieve a more ethically sensitive practice in nursing research than would be possible through reliance on traditional research ethical requirements alone.