Abstract
This article explores the ethical complexities encountered during a research project, where one sub-study aimed at interviewing LGBTQ+ youth in state care. Using a theoretical framework of ethics of care and the concept of consent, we discuss our difficulties finding interviewees and our decision to stop recruiting because of ethical considerations. We aim to show: (1) How different forms of care were expressed during the fieldwork process, and (2) How care practices and non-actions during this process constituted a contextual non-consent. We analyze the ethical dimensions of the fieldwork process and argue that this was an example of how a contextual non-consent was developed, based on lack of response from youth, gatekeepers’ hesitations, the signals we received from allied professionals within NGOs acting as gate-keepers and the professionals in care facilities we interviewed, together with our own mitigations of the risks of contacting youth in facilities where we reached the conclusion that not conducting a certain study will sometimes be the most ethical way of doing research with a vulnerable groups. The study highlights the importance of continuous ethical reflection and the potential need to abandon research plans to protect vulnerable groups. The findings underscore the ethical responsibility of researchers to prioritize the well-being of participants over the pursuit of data, especially when dealing with marginalized populations. This case study contributes to the broader discourse on ethical research practices and the nuanced understanding of consent in qualitative research.
Introduction
Ethical considerations should be a central and continuous part of a research project (i.e., Alexander, 2010; Bosk & DeVries, 2004; Miller & Bell, 2012). As researchers point out, it can be difficult to determine beforehand what kind of potential harm can be done during fieldwork or interviews (Bosk & DeVries, 2004; Swauger, 2011). Usually, this means doing continuous reflections and adjustments regarding how we contact interviewees or handle interviews and analysis. Sometimes, however, we will need to consider the very basis for doing the planned study. We might encounter people in our field work, gatekeepers of different kinds, who say ‘no, the risks are too great – we will not allow access’. Or, the knowledge we gain during fieldwork will change the very basis for the study we are conducting and the ethical considerations of it. Ethical discussions on interview studies usually concern how to safeguard the well-being of participants during stages of gaining access and informed consent (Miller & Bell, 2012), but sometimes we do not even get to these stages in a project. In this article, we describe a “failed” part of a larger study on sexual health and wellbeing among LGBTQ+ youth in state care, where we wanted to interview LGBTQ+ youth with experiences of being placed at residential youth homes or secure state care institutions. We expected the organization of care in these institutions to be based on gender stereotypical, heteronormative and cis-normative ideas of youth sexualities and identities, which risks emphasizing existing vulnerabilities (Lindroth et al., 2025). We know from previous studies that LGBTQ+ youth are over-represented in state care and that they experience difficulties and even harm during their placement (Fish et al., 2019; Kaasböll et al., 2022; Lindroth, 2021; McCormick et al., 2017; Schindele & Lindroth, 2020). The situation in Sweden is not well documented; however, our initial research indicated that the situation may be similar, given the dearth of LGBTQ+-specific data on residential youth care that we could identify. It was important for us to include both professional and youth perspectives in our study, but as we shall see, we later decided to only include the professionals working in different forms of state care
Using a theoretical framework of ethics of care and the concept of consent, we discuss our attempts to find interviewees and our decision to stop recruiting because of ethical considerations. For the purpose of theoretical development and methodological as well as practical use, we aim to show: (1) How different forms of care can be expressed during a fieldwork process (2) How care practices and non-actions during this process form a a contextual non-consent.
We analyze the ethical dimensions of the fieldwork process and argue that this is an example of how contextual non-consent from youth, gatekeepers and researchers was developed, and that not conducting a certain study will sometimes be the most ethical way of doing researching within vulnerable groups.
Ethics in Qualitative Research
Ethical dilemmas and considerations in research in general, and studies using a qualitative design in particular are characterized by uncertainty and messiness, otherwise they would not be dilemmas (Brinkman, 2007; Brinkman & Kvale, 2005). This is important to consider today, not least with international as well as Swedish cases of increased administration surrounding ethical review application and an intense current debate pointing out how social science is being forced into a frame of medical research which is not beneficial for the actual ethical considerations in the research process (Bosk & DeVries, 2004; Eldén, 2020).
Mortari and Harcourt (2012) suggest shifting from a regulatory approach to ethics, focused on preventing harm, to a more proactive view that encourages positive experiences for participants. This approach entails that ethical frameworks should guide the creation of conditions that allow participants to have a positive and meaningful experience in research. Developing research from this perspective means viewing ethical responsibility as a commitment, going beyond merely following rules to building genuine relationships with participants, and creating environments where positive experiences can happen.
When it comes to access to the field and consent from participants, ethics committees are usually concerned with issues of coercion, and safeguarding that participation is voluntary (Miller & Bell, 2012). While this is important, there are also subtle issues of power and vulnerability at play that need to be considered. The protection of vulnerable groups is not satisfactory only in the form of guidelines, contracts or preliminary descriptions in ethics applications (Miller & Bell, 2012). Research within many different academic fields have argued the importance of listening to the voices of the group in question, for example in feminist studies (Gillies & Alldred, 2012). Based on our previous experiences, we agree with researchers that state that vulnerable groups often express a willingness to participate in research studies (Alexander, 2010; Bredal, Stefansen, & Bjørnholt, 2024). With a researcher that is well prepared and open to their needs, vulnerable or marginalized participants can benefit from and use the interview situation as a unique opportunity where they can ask questions and gain more knowledge, i.e., go beyond what the researcher intended and thus equalize power imbalances (Bahner & Lindroth, 2023). For young people in secure state care, the ones highlighted in this paper, a researcher performing a longitudinal interview study can be one of the few trusted adults that a young person encounter over time (Enell, 2023). Additionally, young people have the right to be included in matters concerning them, as stated in the Convention of the Rights of the Child, assimilated into Swedish law since 2018 (Government of Sweden, 2025). This law can be seen and used as a legal, or moral, imperative when conducting studies where vulnerable young people are included. Reducing the risk of harm might for example mean taking the unpredictability of interview studies into account and imagining changes in the research process as potentially ethical (Kostovicova & Knott, 2022). At the same time, as Bosk and DeVries (2004) point out, researchers who conduct social science studies are not particularly good at predicting and describing risks for the participants, partly because risks are unpredictable, partly because we do not generally believe participating in a study to be risky business. However, we cannot guarantee perfect confidentiality, and we cannot predict changes in, for instance, political climate, which might shift focus towards something previously seen as innocuous. As Swauger (2011) points out, we are self-interested in doing our projects, and it is important to recognize where the limit for that self-interestedness (should) end and where the ethics of not pursuing a particular study (should) take over.
Research on critical ethical reflexivity (CER) is important for understanding the development of issues of ethics related to researching vulnerable groups (Rogers & Allen, 2024; Rogers & Brown, 2024). Here, identity, positionality and epistemic privilege are the core concepts for exploring power relations in research. Especially epistemic privilege is important for our analysis, as it together with epistemic humility (Goetze, 2018), points to the importance of reflecting on how knowledge production is tied in with structural oppression of vulnerable groups and how our knowledge as researchers are always partial. In the terms of Finlay (2002), a research study is always co-constituted with the participants, and reflexivity can be done in a number of different ways, where collaborative reflexivity and reflexivity as social critique is particularly important for our discussion here, as the concepts point to the importance of taking structural aspects into account and questioning the researcher as a singular authority. This insight makes it important for researchers to be guided by ethical frameworks that handle these risks. We will use the concept ethics of care to develop how we worked with the issues in our study.
Ethics of Care
There is an ongoing debate between the ethics of justice and the ethics of care within contemporary research. Central to this debate is whether moral decision-making should be grounded in universal principles of impartial justice, as advocated in ethics of justice, or whether it should prioritize context-specific relationships, empathy, and care, as emphasized in ethics of care. The ethics of justice is rooted in universal principles, rules, and guidelines, focusing on fair and equitable treatment for all individuals (Mortari & Harcourt, 2012). In contrast, the ethics of care emphasizes a more contextual and holistic approach to moral decision-making (Botes, 2000). Ethics of care was originally introduced by Carol Gilligan (1982), developed within feminist theoretical traditions, and emphasizes empathy, relationships, and the well-being of individuals in specific, concrete situations. Building on the concepts of responsibility, relationality, and interdependency (Groot et al., 2019), the ethics of care is less focused on adhering to universal rules and more concerned with understanding and responding to the unique needs of others. Ethical actions are viewed as emerging from interconnectedness, with the goal of benefiting others through care and relational responsibility (Gilligan, 1982; Edwards, 2009; Mortari & Harcourt, 2012). Noddings (1984), a key figure in the development of the ethics of care, further expands this relational approach and argue that moral actions are fundamentally rooted in the lived experience of caring for others. For Noddings, ethics is not about following impersonal rules but about engaging with others through empathy and responsiveness, thereby fostering moral actions grounded in care and relational responsibility. Relatedly, Women of Color feminisms highlight how individuals with multiple marginalized identities navigate various systems of power, shaped by specific sociopolitical environments (Nyachae & Pham, 2024). Scholars like Hooks (1994), Collins (1990), and Crenshaw (1989) have significantly influenced the ethics of care by linking care practices to broader issues of social justice, racism, and resistance, particularly within marginalized communities.
Building on Gilligan’s foundation, Fisher and Tronto (1990) further developed the ethics of care in their project to rethink democratic politics away from neoliberalism and toward a framework centered on care, and their model includes five stages: (1) caring about – recognizing a need for care; (2) caring for – taking responsibility to meet that need; (3) care giving – the actual physical work of providing care; (4) care receiving – evaluating how well the care met the needs; and (5) caring with – a form of care that incorporates democratic commitments to justice, equality, and freedom for all. This constitutes a care that is integral and holistic, in which these phases are somehow integrated With the help of the five stages, several points are identified at which conflict, power relations, inconsistencies, and competing purposes and divergent ideas are at play, and potentially impact care processes (Fisher & Tronto, 1990).
In this article we will use the concept ethics of care and its five stages to discuss the empirical case consisting of our fieldwork searching for participants in our study on LBGTQ+ youth in state care. We will show how different forms of care were expressed by different actors at different times during the fieldwork process, and how these actors were involved in developing a contextual non-consent for our planned interviews.
Consent
Consent is the other central concept for our discussion. The act of obtaining informed consent is fundamental in satisfying ethical research principles. However, according to Xu et al. (2020), the act of obtaining consent is dependent on potential participants’ abilities and interests, study complexity and context. Young people’s participation in research is a matter of their citizenship rights to not be silenced, and the Convention on the rights of the child states that it is important to listen to children’s views on all matters affecting them (Government of Sweden, 2025). However, at the same time the process of obtaining informed consent needs to be carefully considered (Lambert & Glacken, 2011). Klykken (2021) argues that informed consent is often treated as instrumental, divided from the actual research, and the initial informed consent might not be enough throughout the research to protect the participants’ integrity. Bhattacharya (2007) reflects upon how to obtain consent and what consent really means in practice, considering that consent is a fluid matter that should give room for negotiation and flexibility due to the complexities of qualitative research.
We will use the concept of consent to take these insights even further – inviting an idea of consent that goes beyond the individual, and that exists on a continuum between consent and non-consent. We will develop the idea of non-consent as potentially consisting of several responses and non-responses during fieldwork that researchers have to consider for the research to be ethical.
The Interview Study
Our process of searching for interviewees (young LGBTQ+ people with experiences of state care) started as soon as we had been granted permission by the Ethical Review Authority (Dnr, 2022-01636-01) in 2022, even though we were not planning to focus on that sub-study for another two years. The research group in this sub-study consisted of four scholars with various professional backgrounds: a sociologist (CA), a school health nurse (ML) and two social workers (CL and AA). Together we had 15+ years of extensive experience in doing interview studies with vulnerable populations such as people with norm-breaking identities (e.g., LGBTQ+ people) and practices (e.g., infidelity, polyamory, surrogacy, criminality), in secluded settings (e.g., secure state care homes, BDSM communities). We suspected that reaching LGBTQ+ youth with previous experience of state care in the form of secure state facilities or private run or municipal residential care homes would not be easy but doable. For ethical reasons, we had decided to only include youth between 18 and 29 that were not currently in any of these state care forms but had been so in the last five years. Parallel to document studies and doing interviews with professionals working in different forms of state care, we tried to find potential youth interviewees by advertising in social media groups related to LGBTQ+ or social work as well as reaching out to professionals in relevant fields (e.g., youth clinics), but we had little luck, or rather none. We expanded our network and directly contacted LGBTQ+ youth groups to visit and build relations, but the groups we managed to contact did not allow for researchers, or even grown-ups to visit the youth groups, even people that were part of LGBTQ+ community themselves.
After one and a half years, half-way into the research project, we decided that it was too hard to try and find LGBTQ+ youth that were not currently in state care. The contacts made by us during this period would mostly only be useful if we decided to include LGBTQ+ youth currently in state care as well. We found another study, with interviews with LGBTQ+ youth currently in state care and the researchers’ arguments for doing these interviews as part of fieldwork building trust and doing follow-up interviews appeared sound (Schaub et al., 2024). Consequently, we made an additional application for the Ethical Review Authority including interviews also with LGBTQ+ youth, 15–18 years old, currently in state care, and with additional follow-up interviews with those under 18. The additional application was granted, and we could continue searching for potential interviewees.
We reached out to youth clinics all over Sweden to ask them to advertise the project and ask potential interviewees to get in touch. We involved a non-profit organization aimed at youth in state care in the project and hoped to be able to recruit with their help, but this proved hard, as we could not keep in touch with our contact person – who was also young and had previously been in state care. After several calls and messages, we decided we could not push that contact any further, even though there had been a clear interest in helping us initially.
We were in contact with several municipal as well as NGO-run LGBTQ+ youth meeting spaces and the professionals (e.g., social workers) working there were very hesitant to help us. They emphasized that the project was very important, but that there was not much they could do to help us reach potential interviewees. They did not want us to come to their meetings and emphasized that it was important that these meetings were reserved for the youth. We had several conversations with these gatekeepers regarding how to compensate youth for their time, which we had limited options for doing. The gatekeepers shared that they had received similar requests from researchers, and that they saw it as their job to protect the youth. They expressed that it would be very hard for the youth to plan an interview and commit that much time and energy into it, and that we should instead consider a short digital survey they could do during one of the meetings, as a digital survey would have ensured young people’s anonymity. NGO representatives we were in contact with had experienced that LGBTQ+ youth had feared that their stories could reach professionals they meet, and cause problems for them. A survey would not have been suitable in our study, but we explored technical alternatives for developing a chat space where we could do the interviews via chat at a time that worked for the young person. However, this eventually proved impossible due to security concerns within the university.
We became convinced that the LGBTQ+ meeting spaces, youth clinics or personal contacts would not put us in touch with potential interviewees but still hoped that visiting state care facilities and residential care homes would be a way forward, provided that we were careful to preserve confidentiality. We were about to start planning visits and discussing how we could manage ethical aspects, when another part of the research project – interviews with professionals at secure state facilities revealed serious harassments and risks for LGBTQ+ youth in these facilities both from other youth and from other professionals at these facilities. The professionals told of how they were careful when admitting LGBTQ+ youth and sometimes advised them to not come out to other youth or to their colleagues, as this could be very risky. Further, we considered that these professionals might have been beneficial in identifying LGBTQ+ youth in state care, and spreading study information, but decided against it since that could have compromised young people’s integrity and safety. For our study we realized that regardless of our planned precautions, our presence would heighten the tensions around LGBTQ+ issues and pose a potential risk for LGBTQ+ youth in these state care spaces regardless of whether they consented to being interviewed or not. We thus decided to not pursue the youth interviews. Instead, we decided to use this case as an example of when continuous ethical considerations might end in the choice of not doing planned interviews. This was certainly not a decision we would have made at the beginning of the project since including LGBTQ+ youth voices was very important to us. According to the Ethical Review Authority we made enough ethical considerations for the project to be ethically sound, however, knowledge developed during the research process, via contacts with gatekeepers and various professionals in the field, made our ethical balancing to swing in a different direction. It might even be argued that by reaching a conclusion of non-consent, the researchers protect the individuals’ integrity and safety, which would be one of the key elements in informed consent.
Three Steps Toward a Contextual Non-Consent
Three different aspects warrant discussion of the events described above: (i) the lack of response from youth, despite different ways of trying to get in touch, (ii) the gatekeepers’ hesitations in allowing us access and with the study design, (iii) our continuous mitigations of potential risks in contacting youth currently in state care. These aspects were analysed by us in light of ethics of care, and that resulted in us stopping the search for interviewees. We will discuss how these aspects can be considered three steps toward developing a concept of contextual non-consent.
Lack of Response from Youth
Despite different ways of trying to get in contact with youth with experience of state care, we did not hear back from anyone. We cannot know how many young people that were reached by our advertisements in youth clinics, or via contacts with professionals, or NGOs. However, the professionals we came into contact with were very enthusiastic in their response to our study and its’ aim. This could be related to that the issue of girls in secure state care has been discussed in Swedish media and several stories of their experiences have been published in social media the last couple of years (DN Debate, 2023). There was thus a societal interest in talking about experiences of state care, but these on-going public discussions had been coordinated by peers, not researchers, which might have made a difference.
It is important to consider actions as well as non-actions in terms of consent to participate in research. Formal consent, in terms of agreeing to doing a specific interview for example, often comes after an overall agreement to participate in a study and showing up to the interview. However, as Ramcharan and Cutcliffe (2001) points out, it is important to emphasize the possibilities of choosing whether to get involved or withdraw from the project even before a formal question of consent is asked. Sixtensson (2021) further problematizes the formal consent, pointing out that consent to participate in research needs to be continuous. Especially when it comes to young people, saying no to participating might be different than among adults. In Sixtensson’s study, young women expressed that they could not say no, but instead of refusing or being explicit regarding their non-consent, they provided the wrong contact information, or did not show up to a planned interview session (Sixtensson, 2021).
This might also be the case with the young people attending meetings held by NGOs that we established but lost contact with. They expressed enthusiasm in helping us find potential interviewees, but then went off the radar and did not respond to our attempts to contact them, despite several attempts. Considering the power aspects of an adult researcher wanting help from a young person with experience of state care, it might not have been easy to decline our questions and suggestions. Instead, to stop answering might have been their best option. Issues of consent are generally discussed in terms of interviewees that we as researchers are already in contact with, but we need to consider consent as an aspect of not even getting access to the interviewees. In our project, we cannot be sure how many young people that heard about the study and chose not to participate, but in retrospect, there were important signals of non-consent to consider, both the lack of response from youth and from youth-run NGO representatives. These signals of non-consent need to be related to other aspects of consent and care during the research process.
Gatekeepers’ Hesitations
Gatekeepers are central to a lot of qualitative interview studies. They can both help and hinder access to potential interviewees and be problematic both in the effect of explicitly or implicitly pressuring interviewees to participate or to not participate (Miller & Bell, 2012). We knew that gatekeepers would be central for our project, and we were therefore in contact with several people involved in LGBTQ+ meeting spaces and NGOs.
NGO representatives who themselves were young people with experience of state care are discussed in the section above in terms of being young people and the challenges involved in not consenting to research. However, they were also gatekeepers in terms of their role in our project. As mentioned above, they were positive initially, when we discussed potential ways of contacting potential interviewees. For instance, they emphasized that the social media platforms needed to be chosen carefully to match the youth social worlds, but as gatekeepers, they did not keep in touch.
The professionals involved in LGBTQ+ meeting spaces on the other hand were skeptical from the start. While they emphasized that the study was important, they just did not see how they could facilitate youth participation. They did not allow us to visit a LGBTQ+ youth meeting to talk about the project, as they prioritized keeping the group adult free and they had refused several requests from researchers before and wanted to be consistent. These professionals said that they could inform the youth about the project, but that in their experience, it would not work to book interviews. Instead, they suggested a digital survey that could be filled out quickly. They also raised the importance of the youth being compensated for their time, especially considering their vulnerable situation.
The gatekeepers cared for the youth in different ways during these interactions. They protected the youth’s spaces, their economic interests and their time and resources by wanting us as researchers to adjust our study and the ways of contacting potential interviewees, to better suit the youth. The gatekeepers might be considered to not allow for the youth’s own voices here, by protecting them from coming into direct contact with us, but here we need to consider that this is a group that is generally not enough protected by adults around them. There is very little room for error when trying to reach a group that has good reason not to trust adults around them. In addition to care and protection, there is also a matter of over-researching certain groups to consider, which was hinted at by the gate-keepers, when they pointed to how they generally handled research initiatives.
As Miller and Bell (2012) point out, the differences between access and consent are not always clear, and we understand the lack of access we experienced during this project as gatekeepers acting as true gatekeepers, and as acting with expanded parental authority. This can be considered problematic as it means that the youth themselves were not given a choice. With an ethics of care perspective, however, the professionals’ actions can be understood as both caring about, caring for and as care giving (Fisher & Tronto, 1990). The professionals we encountered were in close contact with the youth and dedicated themselves to developing trusting relationships with them and were consequently performing according to an ethics of care. They recognize a need for care (caring about) by clearly telling us as researchers to be careful. They are taking responsibility for this need for care (caring for) by investing time and energy into talking to us about how we can better meet the needs of the group. And lastly, they are involved in the actual providing of care (care giving), where they obviously see potential conflicts in providing that care and at the same time presenting, and thereby representing, our study in meetings with the youth.
Mitigating Ethical Risks in Contacting Youth in Facilities
As described above, we realized that we would not succeed in reaching youth with previous experience of state care and formulated a revised application were we lowered the inclusion age from 18 to 15, which in Sweden is the age when youth can consent to participating in research projects themselves without approval from a guardian, and aimed for reaching youth currently in state care. The procedure we suggested included doing follow-up interviews with youth under 18. We proceeded and approached our contacts (NGO representatives and professionals working with LGBTQ+ youth) again, informing them that our ethics approval now included youth currently in state care. However, this did not result in any potential interviewees getting in touch. At this stage, we were already aware that getting access to interviewees was an issue that called for reflection.
In terms of ethics of care, we had at the start designed the study from a perspective of caring with – a care that considers commitments for justice, equality and freedom for all. We deemed it extremely important to highlight the voices of LGBTQ+ youth in state care to allow for improvements of their situation, improvements that should be grounded in their actual experiences. We had also recognized a need for care during this fieldwork (caring about) as our on-going studies and the fieldwork at hand made it clear that the youth needed to be protected in different ways. However, we were now in the process of caring for – taking responsibility to meet the need for care that we saw and were made aware of by others (i.e., gatekeepers as well as interviewees in on-going studies). At this stage, we were unsure of how to take this responsibility. We were planning to visit secure state facilities and residential home facilities and were researching where to go and how to best preserve confidentiality when meeting youth. At this time however, one of our sub-studies in the project started to reveal even more serious problems with homophobia, transphobia and harassment than we already were aware of. In particular, it revealed that professionals both at residential homes and secure state facilities did not think it was safe for LGBTQ+ youth to be open about their gender identity or sexual orientation to other youth but also not to staff (Lindroth et al., 2025). The professionals we interviewed acted as allies to the LGBTQ+ youth and described severe issues they had identified with other professionals and other youth within these care settings.
This put our mitigations regarding safe-guarding confidentiality in a new light. We knew that we would have to introduce the overall study aim (exploring health and well-being among LGBTQ+ youth in state care) and research questions to staff in order to get access to the youth within care facilities for making the interviews possible. The wide-spread negative attitudes found in our recently finished and on-going sub-studies made this impossible. Our mere presence would have risked bringing attention to issues related to LGBTQ+, and doing interviews risked outing and potentially harming vulnerable youth. We reached the decision that taking responsibility for care within this project now meant not doing interviews with youth. Since we could not find any precautionary actions to protect LGBTQ+ youth in secure state care we chose a non-action to protect them.
Reaching a Contextual Non-Consent
At this point in our research project, and process towards abstaining from doing interviews, we had met a lack of response from young people and hesitations from gatekeepers (both NGO representatives and allied professionals working with LGBTQ+ youth). All these responses or insights can be seen as instances of warnings or non-consent and made us realize that our mitigations for protecting youth in case of in-facility interviews would not be enough. Taken one by one, these non-responses or “nos” might only warrant reflection and adjustments of the study design to further incorporate ethical issues. However, taken together they made up several signals from the field that we had to take seriously. The different initiatives we took along the way mapped the landscape of possibilities for doing this study ethically, and we finally arrived at an absolute boundary.
Arriving at this boundary was an analytically based process. Using an ethics of care framework, we could interpret the reactions we encountered in terms of multiple care needs. The caring with – committing to justice and equality – that was initially important for doing this research, had to be complemented with caring about, as we recognized an even more vulnerable situation for LGBTQ+ youth in state care than we had anticipated. Our attempts to care for by carefully designing and re-designing the study to meet these needs proved inadequate and the final act of caring for, turned out to be not doing the youth interviews.
Ethics of care was central for this process, but we also want to conceptualize it in terms of consent, in this case a contextual non-consent, unlike the individual (non-)consent usually described in research. The issue of informed consent is typically conceptualized within the framework of autonomy and individual rights – as a conscious decision made by a rational subject at one particular point in time. However, as have been highlighted, it is a narrow and partly problematic interpretation (Leitch, 2024; Sixtensson, 2021). In this context, the process of gaining access and informed consent from the intended group was not possible to do in a manner that facilitated one-to-one-contact with the youth. This meant that other people (new, unknown gatekeepers) would inevitably be involved, and we needed to consider their perspective and possible impact on the project. Regarding the gatekeepers in the form of professionals in charge of youth meeting groups, we ended up considering their input as highly important especially considering that LGBTQ+ youth in state care often lack active parental involvement and this makes them even more vulnerable. Other people that would potentially impact the research process were the professionals at residential homes and secure state care facilities. In light of our other results, there were substantial risks of these professionals being negative toward LGBTQ+ youth and that the project risked highlighting LGBTQ+ issues, and outing individuals, at facilities that could not protect them. Deciding that the added potential risks described above were enough to stop searching for participants, we considered multiple axes of vulnerability. These were young people, but they were also (or had been) placed in state care and they were LGBTQ+ identified. The intersection of these positions made them vulnerable in a way where their need for confidentiality could not be addressed without highly reliable contact with the staff. This could not be ensured.
Concluding Remarks
The events in the recruitment phase in this study that led up to the contextual non-consent show that it is not enough to have permission from an ethical review board or authority to go ahead with a project. In this article, we have showed: (1) How different forms of care were expressed during the fieldwork process, and (2) How care practices and non-actions during this process constituted a contextual non-consent. By analyzing the ethical dimensions of the fieldwork process using ethics of care and the concept of consent as a process beyond the individual, we argue that this is an example of how contextual non-consent was developed. The lack of response from youth – volunteers within NGOs for youth within state care, gatekeepers’ hesitations, the signals we received from allied professionals working with LGBTQ+ youth and the professionals we interviewed in another study in the project, together with our own mitigations of the risks of contacting youth in facilities, made us reach the conclusion that not conducting a certain study is sometimes the most ethical way of doing researching with vulnerable groups.
In no way do we want our reasoning to be used as an argument against including vulnerable groups in research projects in general. We firmly believe that these voices are the basis for developing ethically and methodologically sound research that can inform policy development. If this is to be realized, other approaches (e.g., studies with ethnographic designs) allowing for relations based on trust between participants and researchers need to be funded and applied. However, there are situations where the risks do overshadow the benefits. Considering the current situation for LGBTQ+ youth in state care in Sweden, the indications and knowledge we had to navigate point toward considerable risks for violence and harassments of an already vulnerable group.
It can be discussed if we have exhausted all possibilities to reach the youth to offer them the opportunity to participate in the study. Would there have been a way to circumvent the gatekeepers and not let them dictate the turn-out of non-consent? In line with Bhattacharya’s (2007) reasoning on fluid consent, could consent in our study have been negotiated in some way to be able to reach the youth and let them be heard? Even though we might have missed an opening in reaching LGBT + youth in state care, we consider that despite our efforts we have not found a way that would not put individual youth at great risk.
In our case, the third (care giving) and fourth (care receiving) stages of Fisher and Tronto’s (1990) ethics of care never became relevant, as we did not gain access to participants. However, we will have reason to return to the fourth stage as we in the coming years will present our project and evaluate how our results may or may not help in changing the situation for LGBTQ+ youth in state care. Secure state care in Sweden is being majorly reformed and we do not yet know what direction this reformation will take (Ministry of Health and Social Affairs Committee Directive, 2024). Hopefully, output from the other parts of the present research project can contribute to raising awareness of work that is needed with this group, and how acutely this is needed. This includes the insights of the process described here, which might be considered a result in itself – that it is not possible or safe to do interviews with this group. This might in the long run bring about more beneficial circumstances that will allow for LGBTQ+ youth in state care to be interviewed and having their voices heard.
As we follow the development around this crucial issue and contribute to the discussion based on our research experiences, we hope to see improvements that in the future will allow for also including LGBTQ+ youth in coming studies. Their voices are important for building sustainable environments that do not rest on or accept homophobia, transphobia and risks for harassment related to this.
Footnotes
Acknowledgements
The authors would like to thank the seminar participants at the Department for Gender Studies, Lund University for their valuable input. A particular thanks to Terese Anving for conceptual suggestions.
Ethical Consideration
Approved by the Swedish Ethical Review Authority (Dnr, 2022-01636-01).
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by The Swedish Research Council for Health, Working Life and Welfare, Forte dnr 2021-01933 2021-01933.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.
