Ethical Principles for the Well-Being of Participants and Researchers in Qualitative Intersex-Related Studies: A Community-Based and Trauma-Informed Approach

Abstract

Research with population groups who have undergone circumstances of vulnerability demands a careful ethical approach to ensure that the study is conducted with the utmost respect and sensitivity, addressing potential challenges not only in regards to safeguarding participants’ rights but also in preserving the well-being of researchers. This paper is based on a qualitative research project. Employing snowball sampling techniques, I contacted 21 participants by e-mail, comprising intersex individuals who had engaged in research, as well as researchers and ethics experts with experience in qualitative intersex-related studies. I conducted semi-structured interviews to gather insights from their respective experiences. The research article focuses on a set of ethical principles that could be valuable in the development of intersex-related studies. While certain principles are directed towards participants and others towards researchers, it is important to note that these categories are not strictly delineated. As the findings suggest, these categories are closely interrelated. Both the literature review and fieldwork underscore the significance of adopting various research methods, such as community-based and trauma-informed approaches, to collaborate in enhancing knowledge production for intersex-related studies.

1. Introduction

In this paper, I follow an understanding of the term ‘vulnerabilized’ as follows: “We define the term vulnerabilized as the outcomes of the processes, driven by distal systemic factors beyond the control of the individual or population, where heightened risks intersect and compound among various social identities and positions” [1] (p. 177). Socioeconomic status, race, ethnicity, age, gender, disability, and geographic location all influence vulnerabilized people [2]. To comprehend the intricacies of vulnerabilized people and its impact on health, well-being, and social outcomes, scholars have employed a variety of research methodologies, from qualitative ethnographic studies to quantitative epidemiological investigations [3].

Research involving people who have undergone circumstances of vulnerability brings to the forefront ethical complexities such as power dynamics, truly informed consent, data confidentiality, and social justice [4]. These concerns highlight the necessity for ethical practices that reframe the role of researchers and participants [4]. Traditionally, researchers are viewed as knowledge holders, with communities serving merely as study objects [4]. However, this perspective is shifting towards more collaborative methodologies. For instance, participatory action research (PAR) empowers communities to co-create research that aligns with their belief systems [5]. This approach is particularly valuable for vulnerabilized populations, as it fosters a mutual exchange of knowledge and promotes equity in research practices.

These evolving research practices and frameworks aim to contribute to the understanding of these groups and give voice to their experiences [6]. As Cornwall and Jewkes [7] emphasize, the empowering role of community-based research is amplifying the voices of marginalized communities and driving social change. To navigate potential ethical challenges, researchers adhere to institutional ethical guidelines tailored to specific contexts. Examples include the AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research, guidelines for researchers and stakeholders in Australia [8], and the SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach in the United States [9], among others.

Continuing along this trajectory, according to the reviewed authors, a significant aspect of conducting qualitative research with vulnerabilized populations, considering the sensitivity of topics involved, lies in integrating training that emphasizes the emotional resilience and cultural sensitivity of the researcher, while incorporating trauma-informed approaches. Such training is designed to prioritize the well-being of the researcher, aiming to reduce the risk of vicarious trauma [10]. “Vicarious trauma” is understood as “the negative transformation in the helper that results from empathic engagement with trauma survivors and their trauma material, combined with a commitment or responsibility to help them” [11] (p. 202). Despite increasing awareness of vicarious trauma in fields such as social work and emergency services, it remains a largely unaddressed issue within academia, often referred to as the “white elephant” of research [10] (n.p.). The emotional implications for researchers are rarely explored within research design or incorporated into project development tasks [10,12,13].

Additionally, it is crucial to incorporate trauma-informed approaches into research methodologies to prevent the re-traumatization of participants and researchers. Recognizing the profound impact of trauma on individuals and communities, particularly those who have suffered marginalization, is essential for ethical and effective research practices [14]. Victims of traumatic experiences have voiced dissatisfaction with insensitive interview processes, where they felt re-traumatized and unsafe [14,15]. By adopting trauma-informed methodologies, researchers acknowledge the complex interplay between past traumas and current vulnerabilities, thereby fostering environments that prioritize safety, respect, and empowerment [16]. This approach not only enhances the validity and reliability of research outcomes but also contributes to the broader goal of promoting social justice within vulnerabilized communities [16].

Building upon the necessity to integrate community-based and trauma-informed approaches into research methodologies, particularly when engaging vulnerabilized communities, it becomes crucial to understand the historical context of marginalized groups. In the context of intersex-related studies, it is important to first clarify the terminology. In this paper, “intersex” refers to “people born with physical sex characteristics (such as sexual anatomy, reproductive organs, hormonal patterns and/or chromosomal patterns) that do not fit typical definitions for male or female bodies” [17] (p. 1). This term is used in alignment with human rights frameworks and many advocacy groups, which favor it over medicalized classifications such as ‘Disorders of Sex Development (DSD)’, due to their pathologizing implications [17,18]. Historically, research and medical practices involving intersex individuals have been marked by profound ethical concerns. “In the 19th century intersex became medicalized and intersexed individuals were classified as abnormal and diseased” [19] (s.p.), and a variety of surgical interventions were performed to pigeonhole the bodies in one of the binary categories. An example of this were the clitoridectomies performed on girls, which were “seen as a ‘harmless’ ‘cure’ for masturbation, hysteria, and an ‘enlarged clitoris’” [20] (p. 189). Later, “[i]n the 1960s, clitoridectomies became the dominant medical standard for female-assigned intersex newborns” [20] (p. 189). This century witnessed the conduct of surgeries that tried to “repair” intersex variations.

Since the 1950s, clinicians have used a treatment protocol developed by John Money and his colleagues at Johns Hopkins University to assign a gender. Emphasizing thorough but swift clinical workups to determine the etiology, clinicians determine a sex for these infants, and surgeons then modify the infant’s body, especially the genitals, to conform to the assigned sex.

[21] (p. 7)

However, ethical concerns became more visible in the latter half of the 20th century. Activists and scholars raised their voices against non-consensual surgeries on intersex infants and called for informed decision making [22]. This period marked a pivotal moment in which intersex advocacy emerged as a force for change, advocating for the recognition of intersex rights and the importance of informed consent in all areas, including research [21,23].

Within medical settings, intersex individuals have been subjected to human rights violations in regards to research, largely due to a lack of control over data [24]. Carpenter has expressed concerns over the research approaches for intersex-related topics, manifesting that “[t]hese approaches have incommensurate, and sometimes contradictory, beliefs about the needs and characteristics of intersex people, with consequences for data quality and interpretation. Neither approach is firmly grounded in the needs of people with intersex variations” [25] (n.p.). Other concerns around research include pathologization practices, assumptions, bias, and conflicts of interests that contribute to the legitimization of human rights violations for intersex people [25].

To assist researchers in the development of studies on intersex issues, scholars and activists have contributed guidelines and reflections to promote good practices within the field, respecting the participants’ rights and creating meaningful research [25,26,27,28,29]. However, despite these advancements, a significant gap remains in the literature: there is a lack of studies that comprehensively explore the perspectives of research participants, researchers, and experts in research ethics within this field. While individual studies have addressed specific aspects, a complete examination that integrates all stakeholders’ viewpoints is lacking. This gap underscores the need for a more inclusive approach to research in this area.

Therefore, in recognition of the history and lived experiences of intersex individuals, this paper aims to address their present challenges within the field of intersex-related studies, serving as a platform to amplify their voices. Equally significantly, this paper will prioritize the researcher’s preparation, highlighting the potential challenges and alternatives for their well-being throughout project development. By giving equal consideration to both participants and researchers, this article underscores the necessity of considering the complete impact of research within vulnerabilized communities. Grounded in a thorough literature review and qualitative fieldwork, this paper seeks to foster a detailed understanding of the interplay between research practices and the well-being of all involved parties.

The findings presented in this paper are part of a set of ethical principles for intersex-related studies. Some of these principles were published in an e-brief as part of the INIA (Intersex—New Interdisciplinary Approaches) project, and specifically, part of the research project “Ethics in Intersex Studies—Exploring Ethical Principles for a Human Rights-Based Research Practice” [30]. The e-brief delineates principles focused on ensuring the well-being of participants and safeguarding their rights, aiming to mitigate past harm and dehumanization experienced by intersex individuals during research [24]. Additionally, it outlines preparatory principles for researchers to foster ethical practices in intersex-related research, while also equipping them to anticipate and manage unforeseen outcomes [31], participant re-traumatization [32], and the potential misrepresentation of intersex individuals’ needs in research [33].

This paper focuses on the two thematic lines described in the e-brief and further develops the latter by adding new information and principles based on the findings from the qualitative fieldwork and literature review. Moreover, while the central focus of the paper is on intersex-related studies, through a literature review, it was possible to extract valuable insights and best practices from general reflections on research ethics in qualitative studies and the ethical frameworks applied to the research of other population groups, discussing how these reflections could enhance, to some extent, the research practices within intersex-related studies.

Both the fieldwork findings and the literature review aim to introduce potential recommendations for research with intersex people and in general, other population groups who have suffered violations of their human rights during research. Through this paper, I hope to weave together insights and experiences from various communities, thus offering a comprehensive understanding and potential strategies within the realm of intersex-related studies.

In my research journey, I have found myself deeply resonating with the ethical dilemmas and concerns explored by the researchers included in the literature review, particularly those regarding indigenous studies and sexual abuse. While my focus remains on intersex-related themes, I believe that sharing these parallels can offer invaluable perspectives to fellow researchers in the field. I hope that this paper serves not only as a scholarly contribution but also as a personal reflection of solidarity and shared struggle.

2. Materials and Methods

This paper embodies more than three years of my journey, deeply immersed in the world of intersex individuals. It has been a privilege to share their experiences, exchange knowledge, and conduct side by side research with them. This project has become not just an academic pursuit but a personal mission, as I have come to embrace their struggles and aspirations as my own. Studying the trajectory of intersex rights over the past decades has been quite inspiring, from battling severe human rights violations to gaining increasing recognition and acceptance each passing day.

By broadening the scope of this study to include other population groups, I aim to highlight the common threads of challenges and rights violations that persist across diverse contexts. Despite the unique circumstances of each group, there are common aspects in the issues they face. This study was developed within the framework of the INIA project and a Ph.D. program, in which the objectives, methodology, and general research structure were largely predetermined by the grant agreement [34]. Furthermore, as part of the requirements for obtaining a Ph.D., the thesis must be an individually authored work, which inherently limits the scope for formal co-design or co-authorship. While examples of collaborative, participatory, and co-research approaches exist within Ph.D. projects [35], the final responsibility and authorship must necessarily be individual. Nevertheless, the INIA project itself incorporated multiple forms of intersex community participation: intersex individuals with academic and activist backgrounds from different world regions were involved as early-stage researchers, advisory board members, ethics advisory board members, trainers in the INIA training program, and secondment supervisors. By consulting them, I sought to ensure that the research focus and structure were attuned to community-identified concerns and ethical priorities, even within the structural limitations imposed by the INIA project and the Ph.D. framework.

This paper presents a combination of qualitative fieldwork and a narrative literature review. The qualitative study involved semi-structured interviews conducted in 2022 as part of the INIA (Intersex—New Interdisciplinary Approaches) European research project. Ethical approval for this research was secured on 11 January 2022, from the Research Ethics Committee of the University of Granada, Spain, with registration number 2450/CEIH/2021. The selection criteria included individuals with experience in qualitative research regarding intersex issues, including ethical experts in the field of intersex studies, researchers with experience in intersex-related research, and participants in intersex-related research. Participants were required to reside in Europe, the Americas, and Oceania. Potential research participants were reached through invitation emails sent to international and national intersex organizations, academic networks, and individuals. Additionally, a snowball sampling technique was employed.

Ultimately, the study enlisted 21 participants, including 10 individuals who identified as intersex or as persons with differences in sex development (dsd). The sample comprised 2 ethical experts, 17 researchers, and 2 research participants. Notably, within the ethical experts and researchers’ cohorts, a total of nine individuals had previous experience as research participants, affording a dual perspective for the research. The semi-structured interviews aimed to provide participants with a platform to articulate their experiences related to ethical concerns in the study of intersex issues, and to allow for a reflective exercise.

Regarding ethical aspects, participants were provided with an information sheet about the project, an informed consent form, an explanation of their rights, the opportunity to review the information before the interview, and the option to withdraw their participation at any point prior to the publication of results. To ensure that eligible individuals did not feel coerced to participate, the interview process always presented alternatives, allowing respondents to refrain from answering questions with which they were uncomfortable. The research adhered to the parameters outlined in the General Data Protection Regulation (Regulation (EU) 2016/679) (GDPR) and Spanish legislation on data protection (Ley Orgánica 3/2018, de 5 de diciembre, de Protección de Datos Personales y garantía de los derechos digitales).

In the course of the interviews, the use of non-pathologizing language was central for fostering an environment of intimacy, confidentiality, and comfort, thereby mitigating the risk of potential re-traumatization. The project offered two psychotherapeutic sessions for intersex participants and upon request, access to contact information for support organizations. Each interview was conducted remotely, recorded, and typically lasted approximately one hour. The interview audio files and transcriptions were securely stored in protected digital spaces.

A thematic analysis was undertaken, following the methodology outlined by Braun and Clarke [36]. Data were categorized using six initial codes, aligned with the structure of the interview script: participant background, pre-interview experiences, experiences during interviews, post-interview experiences, ethical insights, and recommendations/feelings. As a second step, salient themes identified across multiple participants were extracted. This article will focus on the recommendations emphasized by the participants, aimed at addressing current gaps and proposing ethical and human rights-based practices in regards to research related to intersex issues.

The literature review included 78 documents: 43 academic papers, 21 activist documents and NGO reports, 9 book chapters, and 5 national laws. Among them were texts authored by intersex activists and organizations such as OII Europe, interACT, and Brújula Intersexual, ensuring that perspectives based on lived experience informed both the theoretical and empirical framing of the study. This documentary analysis also responds to the expected outcomes of the INIA project and was partially published as two chapters of an eReport [37,38]. Moreover, its writing process (taking care to use non-pathologizing and respectful language) was shaped by suggestions made by participants during the fieldwork, who emphasized the importance of addressing the ethical gaps they had encountered in prior research.

For this paper, the literature review has been organized into the following two groups: (a) reflections on research with intersex individuals, with a primary focus on investigating ethical practices to protect their human rights during research; (b) reflections on research ethics in qualitative studies (focusing on the social science field but also including other perspectives such as community-based research and health research), as well as research involving some population groups who have experienced vulnerability and serious violations of their human rights during research. The latter includes groups such as indigenous people, victims of armed conflicts, survivors of domestic violence, individuals who have experienced forced displacement, survivors of human trafficking, and victims of sexual violence. Within these population groups, the literature review analyzes practices and recommendations related to research ethics and explores how existing guidelines could be beneficial within intersex-related studies.

In line with the principles proposed in this article, the research process itself followed a trauma-informed and rights-based approach. Interviews were conducted with sensitivity to trauma, with opportunities to pause or withdraw at any time. Reflexivity was maintained through positionality memos, and care was taken to avoid epistemic extractivism by offering the interview participants the possibility to review the transcript of their interviews. To reach a wider audience beyond academia, dissemination materials (among them, the e-brief) were designed in accessible formats.

3. Results and Discussion

Based on the outcomes of the fieldwork and literature review, the upcoming section will outline two distinct sets of principles. The first set will focus on protection principles for participants, further categorized into three segments, i.e., research impact, interview process, and negotiation of the research relationship. The second set of principles will address preparation for researchers, subdivided into research competencies and previous training. Each principle, subcategory, or concept will initially be introduced through findings derived from the narrative literature review. This will include ethical guidelines and general considerations regarding qualitative research to provide a broader context for reflections on research ethics, as well as considerations specific to population groups that have experienced human rights violations during research. Following the introduction of each principle or specific concept, the findings of the fieldwork will be presented in relation to each topic. At the end of each segment, reflections will be made on how intersex studies contribute to the particular principles or concepts previously studied.

3.1. Protection Principles for Participants

This section will explore some fundamental protection principles aimed at ensuring the safety and rights of participants in intersex-related studies. These principles, informed by insights from the literature review and fieldwork, are categorized into three key segments: research impact, interview process, and negotiation of the research relationship.

3.1.1. Research Impact

As outlined in the reviewed literature, there are various aspects to consider when planning research involving vulnerabilized populations, as research processes and outcomes can potentially exacerbate vulnerability [39]. According to Hurst [40], from a bioethical perspective, certain population groups are more vulnerable to harm during research, thus necessitating greater efforts to protect their interests. Regarding research impact, Mertens [41] argues that research targeting vulnerable groups and cultural minorities “should be action-oriented, consciously addressing inequities, and provide support for transformative change in the form of increased social, economic, and environmental justice” (p. 2).

In line with Mertens’ [41] work, it is crucial to examine the research impact on vulnerabilized communities. Thus, following the literature review findings, two distinct circumstances regarding the research impact were identified: instances where research merely replicates existing knowledge without innovation, and opportunities where the research team collaborates with the community, even beyond the research scope. While these circumstances do not specifically focus on intersex-related research, their implications are significant and could be extrapolated to underscore the dual role of research as both a potential catalyst for positive change and a potential source of knowledge development within intersex-related research.

When Research Repeats Existing Knowledge

In the literature review, Kawulich [42] suggests that from a qualitative research perspective, studies that merely replicate existing findings, without introducing novel insights or methodologies, run the risk of contributing little to the advancement of knowledge, failing to provide new insights or solutions to the community. This redundancy of knowledge could hinder progress in fields that are vital to the well-being of vulnerabilized communities, such as public health or social sciences [43].

Replicating research without adding value also raises ethical questions about the justification for subjecting vulnerabilized populations to the research process [44]. Israel et al. [45] affirm, from a community-based perspective, that when research does not provide new insights or benefits, it may be perceived as exploitative or disrespectful to the participants; for this reason, ethical research requires a commitment to conducting studies that are scientifically and ethically sound and that genuinely contribute to knowledge or to the well-being of the community.

Within these social science perspectives, beyond the potential for limited knowledge advancement, redundant research can also have practical consequences [46]. Precious resources that could have been directed toward innovative and impactful studies may be tied up in projects that essentially reiterate what is already known [46]. As highlighted by Callon et al. [47], in resource-scarce settings, such as those involving underserved communities, the opportunity cost of redundant research can be exceptionally high.

During the semi-structured interviews of the study, participants highlighted aspects related to research repeating previous knowledge. They emphasized that researching already well-developed topics and retelling them could lead to a stagnation of knowledge.

[…] to what extent should we continue to do research on intersex? And I think this is also a real question because for me, we have the data, actually, to make the right decision clinically, politically, in terms of laws and everything […] we should really, you know, not just thinking about how to do ethical research to do more research on intersex. But the question: do we need more research on intersex? Clinically?

(Researcher, P2)

[…] be sympathetic to the experiences and the issues they’ve already faced, and yet be aware of the data that’s already out there. So, if your research question isn’t adding anything, then why are you asking it?

(Researcher, P13)

Impact on the Community

From the perspective of indigenous studies, research that genuinely identifies the needs of the people by facilitating their participation can have a greater impact, not only on knowledge but also strategically for the positive development of the local community [48]. It can become a valuable resource for addressing pressing issues and improving the well-being of the people involved [48].

Authors, particularly those of indigenous studies, emphasize the importance of community-based research to earlier identify the situations in which research could not only provide a valuable contribution but also actively address the community’s pressing issues [8,48,49,50]. Using the concept of community-based studies, research could be instrumental in identifying the unique needs, challenges, and strengths of a community [51]. As Bourassa et al. [49] state, identifying the community needs through a gradually involving participation may not only help to collect more accurate data but can also promote a sense of self-determination and agency among community members.

Research that benefits the community often flourishes through collaborative partnerships among researchers, community organizations, and community members [45]. As highlighted by Burnette et al. [50], incorporating a relationship-focused approach within the research design could enhance trust, especially in communities that prioritize relationships. This approach fosters long-term connections that extend beyond the research, establishing networks for future projects and advocating for community needs [50]. In this sense, research with survivors of domestic violence aligns with this idea, implying that studies built through long-standing collaborations with the communities could develop partnership plans with beneficial commitments for everyone involved [52].

Throughout the interviews, a large number of participants advised the researchers to work closely with the communities, always being honest in regards to the research goals and aspirations.

[…] community based participatory research is the idea that communities should decide what’s important. Rather than have other third-party stakeholders, like clinicians or the LGBT movement, decide what’s important for us.

(Expert in research ethics, P1)

The three groups interviewed were asked to propose some advice for researchers of intersex-related studies to create human rights-based research. A common answer suggested the engaging of meaningful collaborations with intersex organizations in all the steps of the study to produce research addressing the community needs.

Consult intersex people I guess before about your research, and during the research, and after. So maybe having a collective discussion about it, so that there could be interaction and discussion about how to improve and how to also make communicate about it afterwards, so that intersex people can have access to it so yeah.

(Researcher, P9)

The two previous aspects of research impact, i.e., repetition of existing knowledge and impact on the community, are concerns expressed in a submission to the Australian Human Rights Commission [53]. The submission suggests that studies without a community-based approach may lack relevance for the intersex population, failing to address community priorities and potentially reinforcing stereotypes [53].

Implementing participatory and collaborative practices could address not only the issues identified by participants in qualitative research regarding the repetition of knowledge but also empower participants and their experiences by actively involving them in the research process. Scholars in the field of intersex studies have highlighted the lack of ‘patient directed researh’ in this area, contributing to the marginalization of intersex people, advocating for more research that grants higher agency to intersex individuals and centers their voices [54] (p. 505).

Garland and Travis [55] advocate for an approach to intersex research that involves consulting the community and recognizes their knowledge:

[…] we do not talk for intersex communities but hope to continue to talk with them in the dialogue we have developed over the last decade. Our value to the intersex community has always been our knowledge of law and legal theory and the way our academic credentials and privilege have been able to open doors to policy makers, lawyers and, to a much more limited extent, healthcare professionals. In return, our work, and this particular project, is entirely indebted to the intersex people who have taken their time and energy to speak with us and to (re-)educate us on what it means to be intersex.

[55] (p. 3)

These reflections reinforce the view that community engagement should begin not only during data collection or dissemination but also in the very early stages of project design. Rather than treating community input as an add-on, participants advocated for its integration throughout the research lifecycle, from identifying priorities to shaping ethical frameworks and dissemination strategies. This perspective aligns with broader calls in the literature for collaborative research that centers the voices of those most affected, thereby enhancing both the ethical legitimacy and social relevance of intersex studies [20,55]. Therefore, this study strongly supports the claim that including people with lived experience in all stages of research is essential to ensuring relevance, trust, and long-term impact.

3.1.2. Interview Process

According to the literature review, an ethical interview process demonstrates a commitment to respect and dignity for participants who have previously been subjected to harm or exploitation [56]. There are a variety of aspects to consider within the development of an interview process. These include not only the logistical and methodological aspects but also the ethical considerations that ensure the well-being and autonomy of the participants [56]. The reviewed literature highlights the importance of continuously reinforcing participants’ rights throughout the research process, ensuring that they are fully informed about their involvement and the potential risks and benefits [14,50,52]. It also emphasizes the need for a respectful use of language, recognizing that language can shape participants’ experiences and their perceptions of the research process [57].

Respect for Participants’ Rights

The historical objectification of participants within social science research, particularly in communities with limited resources and power, has often resulted in their voices and perspectives being diminished or excluded from the traditional research practices [58]. The literature review analyzed a variety of strategies that have been implemented to protect participants’ rights during research and therefore, avoid possible abuse of power. A common strategy found in the texts studied was the balance of power distribution during the research process, which implies the active involvement of the participants within the decision-making course of the project, from the process of contacting research participants to the dissemination and sharing of findings [52,58,59]. The authors suggest that actively involving participants and giving them control over aspects of the research could diminish scenarios of potential rights violations [14,60].

Continually reinforcing the participants’ rights can be a strategic approach to safeguard the well-being of the participants throughout the research [15]. This approach can also empower participants to feel a sense of control during the study [15]. Langballe and Schultz [61] conducted a study involving recorded interviews with victims of a terrorist attack, aiming to identify key elements reflecting a positive impact during the interview process. The study concludes that interviews where the researcher demonstrated respect for the participant’s lived experience, fostering an environment of safety through the use of sensitive language and exhibiting expertise in handling traumatic experiences, instilled confidence in the participants and thereby, minimized negative emotional reactions [61].

The respect for participants’ rights was a topic mentioned by the individuals interviewed during the study. Some of them suggested examples of good practices to ensure the participants are not being violated:

There was always that kind of checking out: which was not right. How did you feel about that? Was there anything you felt uncomfortable with? Anything that I, the interviewer could have done differently? Which in my view is best practice? You know, it’s kind of being open and valuing the person you’re interviewing.

(Participant, P5)

Respectful Language Use

Another common strategy was the implementation of linguistically appropriate approaches as a way of helping to correctly engage with the population issues, respecting the ways that the participants address and frame sensitive issues [8,57,62]. Bloom [57] emphasizes the importance of researchers engaging with the community’s language to enhance community involvement and build trust. This linguistic connection fosters deeper relationships and facilitates open communication, leading to more meaningful collaborations [57]. By immersing themselves in the community’s language, researchers demonstrate respect for its culture, contributing to more authentic and impactful research outcomes [52].

Participants in the qualitative research considered it important to highlight that part of respecting intersex people’s agency is related to the use of their preferred terminology:

[…] we’re talking about vulnerable populations, and to them, even the right terminology is very important. Otherwise, it’s stigmatizing and it’s violating their rights. So, we want to do research and invest in LGBTQI human rights, but we can do it all, only when we do it in an ethical way.

(Researcher, P6)

Within the field of intersex-related studies, important reflections have been contributed about both topics, i.e., respect for participants’ rights and language use. From a perspective of intersex activism and studies, interACT [26] and Carpenter [25] manifest the importance of only engaging in research that tries to avoid unnecessary risks to the participants and fully complies with the guarantee of their rights. Hart and Shakespeare-Finch [63] also reflect on the importance of a research approach reflecting ethical responsibility that echoes the participants’ voices and uses measures to avoid distress to them. The authors see research as a tool of reparation and advocacy for the owners of those traumatic life experiences, and also make a call to observe the research as a way to make visible intersex peoples’ narratives and “improve the very systems and services that continue to negatively influence the lives of the growing intersex community” [63] (p. 16).

Ensuring the respect of participants’ rights during research holds particular significance for the intersex community, given their historical lack of agency regarding their bodies and the performance of clinical procedures without their free and informed consent [21]. This history of medical interventions perpetuates a sense of disempowerment among intersex individuals, further exacerbating the need for ethical research practices that prioritize their autonomy and well-being [64].

Within the intersex research, the use of appropriate language is a key element for developing a project that respects the participants’ rights and linguistic preferences [37], and more precisely, doing so when conducting interviews. During 2023, I carried out a narrative literature review of qualitative and quantitative research on intersex issues. I found in some of the manuscripts a pathologizing language and controversial use of images [37]. Amets Suess Schwend [29] proposes the implementation of human rights-based principles as part of an “’ethics of depathologization’” (p. 111). These principles aim, among other aspects, at “using and promoting respectful, affirmative, and non-pathologizing conceptualizations and terminologies” [29] (p. 111).

3.1.3. Negotiating the Research Relationship

Menzies [65] argues that the purpose of the research negotiations is to go beyond the traditional consultation of the community, where their voices and concerns could be misunderstood by the researcher. Researchers could establish clear channels of communication for participants to express worries, report discomfort, or seek adjustments to the research process [56,58]. Hence, this negotiation could help to clarify the community and participant expectations and promote healthy discussions regarding the research aims [60,65]. Within the negotiation regarding the research relationship, confidentiality and self-determination were two aspects highlighted within the literature review of the groups studied.

Confidentiality

Campbell et al. [66], focusing on research with victims of sexual crimes, and Ellsberg and Heise [14], studying victims of domestic violence, suggest negotiating the research relationship to include stringent confidentiality measures for safeguarding participants’ identities and sensitive information, robust data security practices to prevent unauthorized access, and the development of safety plans for those at risk of emotional distress or harm due to their participation. The authors emphasize the importance of protecting privacy and confidentiality, as compromising participants’ identities could potentially impact their physical safety [14,66].

The WHO Ethical and Safety Recommendations for Interviewing Trafficked Women [67] and the WHO Ethical and Safety Recommendations for Researching, Documenting, and Monitoring Sexual Violence in Emergencies [68] suggest generating a discussion of risks in which both parties discuss the benefits, aims of the research, and the possible implications, particularly in regard to their safety and intimacy. WHO et al. [68] report cases where participants did not appreciate the reach of the research, and their identities were compromised, bringing stigma and re-traumatization to them. To avoid these scenarios, WHO [68] advises establishing “confidentiality standard operating procedures where it is explained and specified the steps that should be taken in the event of a breach of confidentiality and also the consequences” (p. 18). These kinds of documents and discussions could guarantee the research to be as ethical and safe as possible for the victims [68].

The participants in the study also reflected on confidentiality within the interviews, emphasizing their importance throughout the research process:

[…] I think it’s very important that confidential and confidentiality be respected and of course, they couldn’t just like give access to any researcher to people who have been treated, you know, who are in their database.

(Expert in research ethics, P10)

[…] I would say stuff like, “ok what you shared was really intimate, let’s see if it goes into the thesis but you will have a chance to review that”, reminding that I was writing something with that, that it would be shared and it would be public, trying to be really honest, like really clear to the fact it was not just chatting. I think that there is such a need to speak to people that they can trust, that they would share a lot, yeah I think this would be the main difficulty I faced.

(Researcher–Participant, P11)

Self-Determination

Analyzing the literature of indigenous studies, self-determination emerges as a relevant principle for research participants, where community members guide the “ownership, control, access and possession—more commonly known as OPAC” of the project information [69] (n.p.).

The four principles include aspects of OCAP^® and assert that First Nation individuals and communities have authority to own, control, and to have access to their information and have possession of the data. It is a direct political response to colonial approaches to information and is ultimately self-determination applied to data.

[49] (p. 6)

FNIGC [69] created the following definitions of the principles:

Ownership refers to the relationship of First Nations to their cultural knowledge, data, and information. […]

Control affirms that First Nations, their communities, and representative bodies are within their rights to seek control over all aspects of research and information management processes that impact them. […]

Access refers to the fact that First Nations must have access to information and data about themselves and their communities regardless of where it is held. […]

Possession. While ownership identifies the relationship between people and their information in principle, possession or stewardship is more concrete: it refers to the physical control of data. […]

[69] (n.p. bold removed)

Applying these principles to communities that have suffered from research violations of their human rights could help to address some of the concerns voiced by participants from these communities over the years [70,71]. Schnarch [71] suggests that these principles could prevent issues arising from analyzing, interpreting, and reporting data without input from participants, as well as the inappropriate use of sensitive information that may bring them discomfort or compromise their privacy.

In the qualitative study, some people mentioned the importance of constantly providing information to the participants. They gave different examples such as being clear about the funder and direct aim of the project, sending the transcripts to the participants and confirming that they agree with them, explaining throughout the study the possibility to withdraw from the project at any moment, sharing the final version of the study before publication, and also sharing the findings after publication. These types of protective measures within the research could enhance the relationship of trust and avoid possible harm for people involved in the study.

I think it is important to inform the participant: hey, this is my work and yeah. Also maybe ask for like, if you want to proofread your statements or something like this, you know because I realize many people sometimes misunderstand what I’m trying to say because of the researchers own conception of what I want to say.

(Researcher–Participant, P20)

Within intersex studies, crucial topics such as confidentiality measures and participants’ agency have emerged within the discussions around potential violations of participants’ rights, risks of instrumentalizing participants, breaches of personal data confidentiality, and misrepresentation of their narratives. Academics specializing in intersex studies, intersex activists, and individuals within the intersex community vehemently criticize these issues [21,24,33,72].

This underscores the ethical imperative for researchers to uphold data sharing and storage practices that respect the ownership of intersex people’s narratives. As advocated by Dan Christian Ghattas [73], research must adopt a “sociological and depathologising human rights perspective” (p. 1), emphasizing collaboration with intersex scholars or organizations in regards to data collection.

3.2. Preparation Principles for Researchers

This section will explore some principles aimed at helping researchers to better prepare for the development of projects on intersex-related research projects. These principles, gathered through the analyses of the literature review and fieldwork findings, are divided into two main sections: researcher competencies and previous trauma-informed approach training.

3.2.1. Researcher Competences

One fundamental pillar of ethical research with vulnerabilized populations is preparing and training researchers [74]. Therefore, it is crucial to analyze the aspects involved in researcher preparation, emphasizing the importance of individual readiness and prior training, especially in the context of conducting research with individuals who have experienced traumatic events.

Based on the literature review, it was possible to observe how individual preparation plays an important role in ethical research with vulnerabilized populations. The literature reviewed in the field of sexual violence [66,67,68,75] and research ethics in qualitative research [76] highlights certain ethical understandings that researchers should possess to improve research outcomes when working with diverse population groups.

In addition, scholars from the review consider different elements crucial for individual preparation, among them emotional resilience and reflective practice.

Emotional Resilience

The sensitive nature of developing studies with communities who have experienced severe violations of their human rights could unexpectedly cause emotional distress for the researcher. From a perspective of social sciences, an existing academic culture is observed that encourages researchers to be neutral and detached from the issues studied, and therefore, the ability to feel different kinds of emotions could be viewed negatively [77]. However, engaging in a research approach that co-creates with the participants requires the research team to establish a deeper human connection by getting close to the participants, sharing with them, and honoring their knowledge [14]. These practices foster a deeper emotional connection with the traumatic experiences that the participants have endured, making the researchers more susceptible to experiencing distress due to this emotional engagement [14].

Researchers in the fields of sexual assault, domestic violence, and indigenous studies have acknowledged experiencing overwhelming feelings and psychological distress following the completion of qualitative research, especially during interviews and data dissemination [12,13,14,50,67]. Williamson et al. [13] affirm that qualitative methodologies “not only bring researchers face-to-face with people who have experienced trauma, but also require researchers to remain immersed in the data over lengthy periods, through the iterative processes of data collection, transcription, coding, analysis and paper writing” (p. 58), which could be traumatic for the researcher.

Therefore, authors such as Campbell [12] and Williamson et al. [13] agree with the idea that it is extremely difficult not to be emotionally engaged, particularly in qualitative research that involves sensitive topics. Rebecca Campbell [12] in her book Emotionally Involved discusses the necessity of developing emotional resilience and coping strategies to manage the emotions that researchers will experience throughout the research process. She extensively explains the emotional impact of researching violent topics such as rape [12].

At the end of the interview, as we walked to her car, this woman asked me a question that has stuck with me ever since: “So, this is what you do for a living? Listen to women talk about rape? Talk about all the bad things done to us, you know, by the rapist, the police, the doctors? Talk about how much this hurts, how rape feels?” “Yes,” I replied slowly, feeling every story over the past nine years sink into me, “this is what I do for a living.” “How can you think straight in all that pain?” she asked.

[12] (p. 8)

Acknowledging the significance of the potential harms that researchers could experience during the project is considered the first step in developing strategies to process the emotional impact and prioritize their mental well-being as a checkpoint throughout the study’s development [13]. Self-care strategies and supervision by experienced mentors are options that could enhance emotional resilience [78]. According to Jewkes et al. [79], taking care of the research team should be a priority within the project: “Appropriate time and structured opportunities should be provided so that researchers can discuss the interviews and emotions they generate on a daily basis during fieldwork” (p. 12). In this sense, Barrington and Shakespeare-Finch [80] recommend the use of support groups for the researchers to digest the possible consequences of the research project and create alternative mechanisms for maintaining their well-being.

When addressing sensitive research topics, training can protect not only the safety of the participants but also the researcher’s emotional response to the potential impact of qualitative research [79].

Within the conversations about researcher preparation, the research participants pointed out some of the problems present in the research of intersex-related issues in the semi-structured interviews. One aspect that was not mentioned in the questions, but that researchers emphasized throughout the interviews, was the importance of taking care of their own mental health and building emotional resilience.

I think that the first thing is that people should be prepared to hear horrible things, and have a support network after each interview because you really have to get some care after two hours of interviewing someone and sharing horrible stuff, you need to have people just taking care of you, you need to be able to get some air, it can be very hard especially if you are intersex yourself, or if you are survivor of sexual violence or something like that, it can be very triggering for many people including intersex people or those that have suffered gender violence.

(Researcher–Participant, P11)

[…] I would say if you, if the researcher does it, right. It will hurt him, the researcher as well, it will be very psychologically challenging because you’re really talking to persons who really had their genitals cut as babies as little children […]. So, it will be, it could be traumatic also for the researcher.

(Researcher, P8)

Reflective Practice

Undertaking qualitative research with populations who have experienced severe human rights violations can impact researchers in various ways [12]. To address this, Dickson-Swift et al. [81], working with sensitive research topics, advise researchers to incorporate a reflective assessment into the project design, analyzing potential issues such as feeling guilty or vulnerable, developing attachments, becoming desensitized, and experiencing mental or physical exhaustion. They also recommend evaluating potential strategies for managing these situations and if necessary, allocating a budget for them within the project design [80].

Lavallée [82] argues that particularly within the study of indigenous communities, there must be a reflective practice before the research design to clarify the personal motivations and biases towards the community. Smith [58] further emphasizes that for indigenous research, developing a critical reflection of inherent motivations, assumptions, and values could form the basis for the research process and serve as a means of participating in decolonizing research. Dillard [83], also drawing from indigenous perspectives, suggests that researchers share and document personal reflections in journals to track how their thoughts develop throughout the study. This regular self-reflection can help identify potential pitfalls and ethical blind spots, fostering a deeper awareness of the researcher’s role in the research process [82].

The participants in the qualitative study mentioned the constant practice of self-reflecting on the reasons why they are conducting their research.

[…] people who are not intersex end up here for a reason, because I think everyone ends up researching something for a reason, okay, this is not something intersex, okay, so I think it’s important to review that […] to see what our points of union are, in what things I am recognizing myself, in what experiences of mine I am recognizing myself when I listen to them, because if I do not recognize those experiences, it is much easier to cover them, much easier to say, Ah yes I know what you want to tell me, because I have also lived another way, I have also lived this […].

(Researcher, P14, own translation)

Within intersex studies, several authors have positioned themselves as allies of the intersex community and have advocated for the community’s issues through academia [29,54,55]. Researching a community that has endured serious human rights violations entails not only gaining a deeper understanding of their history and struggles but also engaging in internal reflection on the motivations driving the project development [84,85,86]. Sam Fernández Garrido [85] delves deeply into an exercise of self-observation and self-analysis of feelings during the Ph.D. research, highlighting the emotional intensity of the interviews and the importance of recognizing and identifying those emotions. The author emphasizes conducting constant self-observation to distinguish between instances useful for the projects and those beneficial for them as a researcher [85].

Lundberg [86] also conducts an analysis of emotions regarding researching intersex-related issues and reflects on the challenges of reflexivity within the research process for a Ph.D. thesis. The author highlights the struggle of maintaining active reflection and positionality, while simultaneously navigating the steep learning curve of a Ph.D., which often emphasizes dissemination and publication timelines [86].

CLINICAL PSYCHOLOGIST: Yes, as a clinical psychologist, I can really see that you were struggling a lot with your feelings during your doctoral research. And I can see that it must have been emotional to return to those feelings as well. I wonder if you want to explore that a bit?

RESEARCHER: It was emotional! And being educated in a very post-positivist and quantitative discipline as a researcher, I interpret having all of these feelings as being biased and as being a bad researcher.

CLINICAL PSYCHOLOGIST: Okay, I see. So struggling with not only the emotions, but with not living up to a certain idea of how a researcher should be?

RESEARCHER: Yes! Exactly! And as an interdisciplinary scholar, maybe trying to navigate inconsistent and competing ideas of how a researcher should be? On the one hand, trying to adhere to those more quantitative ideals of my discipline and, on the other hand, trying to live up to ideals of being a critical and feminist scholar with social justice and ethics of care in mind.

[86] (p. 19)

3.2.2. Trauma-Informed Training

A prominent concern emerged among the studied groups, i.e., the participants’ potential distress and the secondary effects that can arise from the interview process. Survivors of traumatic experiences denounced insensitive interview processes where they did not feel safe, and remembering painful memories brought on emotional consequences that they did not expect [14,15,87].

While many qualitative research studies involve the participation of individuals who have experienced traumatic life events, including communities with a history of oppression, there are few requirements for researchers to undergo specific trauma-informed training before designing their projects [16]. Hopper et al. [88] argue that, given the prevalence of trauma among vulnerabilized populations, receiving training regarding trauma-informed approaches could be of great help in enabling researchers to recognize signs of trauma, respond sensitively to disclosures, and avoid the re-traumatization of participants.

A trauma-informed approach entails understanding trauma, along with its mechanisms, long-lasting effects, signs, and appropriate responses, to prevent re-traumatizing the participants when research triggers traumatic experiences [9]. As Alessi et al. [16] argue:

Moreover, if researchers are unprepared to engage research participants affected by trauma, participants may lose the opportunity to tell their whole stories and thus may feel silenced or even ashamed. […] Without a detailed understanding of how to be trauma-informed throughout the research process, researchers may end up unwittingly re-traumatizing participants and, it should be said, themselves.

[16] (p. 2)

Within a trauma-informed training, two different approaches to trauma were considered for the structure of this approach: interpersonal trauma and collective trauma.

Interpersonal trauma is violence and abuse that occurs between two or more people—typically where one or more person is the causing harm to the other(s). Because violence and abuse are about power and domination, research shows that people of Color, LGBT folks, and those with disabilities experience more interpersonal trauma.

[44] (n.p.)

Understanding interpersonal trauma is considered crucial for research due to the power dynamics that often emerge in the participant–researcher relationship [16]. These dynamics can profoundly impact and trigger participants, as the abuse of power is intimately related to many traumatic experiences, “[f]or instance, interpersonal trauma typically occurs within relationships where power imbalances exist and are exploited, which is frequently the case with intimate partner violence and child abuse” [16] (p. 6).

On the other hand, the American Psychological Association refers to forms of collective trauma [44].

Collective trauma is an event or series of events that impact not only one person but also a group of identified or targeted people. Collective trauma usually refers to traumas rooted in oppression or discrimination toward a minority group by a dominant group, in contrast to interpersonal trauma.

[44] (p. 1)

Scholars, particularly within the field of indigenous studies [5,50,89], reflect on the recognition of these systems of oppression and marginalization within qualitative research, aiming to implement strategies that do not exacerbate these power imbalances.

Within the literature review, I identified the concepts of cultural sensitivity and preparedness for unforeseen situations as strategies for implementing a trauma-informed approach in research in general and specifically, intersex-related research, considering both angles: the interpersonal trauma and the collective trauma.

Cultural Sensitivity

Cultural sensitivity is relevant as a trauma-informed strategy in research because understanding and immersing oneself through the lens of individuals’ life experiences and community history makes it easier to recognize the widespread impact of trauma and its consequences for participants [49,56,89]. According to Kirmayer et al. [90], who conducted research with migrants and refugees, researchers should cultivate a profound understanding of the experiences and cultures of the groups they intend to study. Within a broader discussion on qualitative research, Denzin and Lincoln [4] highlight that cultural sensitivity helps the research process to respect the values and beliefs of participants, minimizing potential harm.

In the field of indigenous studies, Snow et al. [59] employ the term “critical immersion” (p. 365) to portray the various processes through which researchers can fully immerse themselves in the community context, re-experiencing their culture to foster greater openness and understanding in research. The authors recommend the exercise of wearing the community’s lens to better understand the ways in which the community sees the issues in order to be able to initiate knowledge-building from a standpoint of awareness of the people’s experiences and history [59].

Many authors in the field of indigenous studies have linked the implementation of cultural sensitivity and cultural safety to the decolonization of perspectives and the deconstruction of Eurocentric systems of knowledge [49,50,58,59,91]. Recognizing alternative knowledge, methodologies, and practices could assist researchers in re-evaluating their skills to navigate those cultural differences and apply these concepts in the project [10]. In this sense, the active practice of cultural sensitivity could contribute to bringing more recognition to the community’s beliefs and perspectives [49].

Concerning cultural sensitivity, the fieldwork participants emphasized the relevance of an understanding of intersex people’s experiences and respect for how they identify. Some of the people interviewed highlighted the importance of respecting the terminology preferences of the research participants, which could not be aligned with the term intersex but more towards other discourses, such as the term “‘disorders of sex development’ (DSD)” [92] (p. 488).

If someone is like, I don’t have an intersex identity, I have a disorder and it’s really, really important for me to be recognized as someone who has a DSD, we’re like, that’s completely fine because the way your experience is constructed is so through that medical lens, through the medical profession, that makes complete sense […]. And that helps us deal with the kind of plural ways that intersex people see themselves.

(Researcher, P9)

Preparedness for Unforeseen Situations

In a trauma-informed approach to research, understanding and recognizing the impacts of trauma may not be sufficient [9]. It is also essential for researchers to provide appropriate responses and to be prepared for unforeseen situations during the study, particularly during the interviews [9]. Researchers can implement various strategies to prepare for such occurrences. For example, authors who conducted research involving children who have experienced traumatic events suggest that informing participants about potential issues that may arise during the interview, such as long silences, the incomplete understanding of questions, and the possible occurrence of flashbacks, among others, can depend on the participant’s personal experiences and can be fully understood by the researcher; therefore, participants are encouraged to ask questions at any time [93].

Regarding research conducted with victims of crimes, Langeballe and Schultz [61] emphasize the significance of interpreting nonverbal signals that participants may exhibit during interviews, indicating discomfort with continuing the questioning. They consider that including various types of questions in the strategy for unforeseen situations could prove useful in addressing any future difficulties.

Does the interviewee look and sound comfortable or uncomfortable? Does he/she seem grounded and present in the here and now? How does he/she looks at me? Is he/she tense? What feelings are beneath the tone of the interviewee’s vocal expression? When feelings arise in the interview process, it is important to highlight that not all emotional states will require much effort to be regulated or make the interviewee feel sufficiently comfortable enough to continue with the account.

[61] (p. 688)

Snow et al. [59] suggest that in some instances, participants or the community to which they belong may experience trauma responses toward the researchers or the research processes due to their previous personal or community experiences [59]. Understanding the potential emotional impact that an interview process can have, some authors advise researchers to provide participants with information, referrals to support services, and other assistance that the person may need by the end of the interview or research journey [14,57,66,94].

The preparedness for unforeseen situations and the information for support services were ideas highlighted by some of the participants in the study. They emphasized the importance of taking all possible measures to prevent re-traumatization during the research.

[…] what I worry about the most is just like intersex people re-traumatizing themselves through participating. Again, it depends on the research. But like particularly if they’re sharing a lot of very, you know, personal and traumatic experiences. I think it is really important to have a psychologist on hand.

(Researcher–Participant, P17)

[…] making sure that there are actual support networks available for people to link in with after they have participated with their support.

(Researcher, P19)

The participants mentioned the training that a researcher in intersex studies should have to deal with a population who has gone through traumatic experiences. Participants compared their experiences with victims of sexual assault, and how it creates a necessity from the researcher to be trauma-informed otherwise it could create re-traumatization.

I think that researchers who do research with intersex people, probably the majority of them have not received any trainings. So they don’t really know what it means ethics and research, ethical guidelines, vulnerabilized groups, trauma because when you ask for this kind of information for intersex people, it means that you kind of re traumatizing them […].

(Researcher, P6)

interACT [26] and Carpenter [25] call for intersex researchers to be trauma-informed during all project development. interACT refers to the SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach [9]. This document is a health care guideline not focused on intersex individuals but rather designed for all people who undergo traumatic experiences, acknowledging that “[t]rauma has no boundaries with regard to age, gender, socioeconomic status, race, ethnicity, geography or sexual orientation” [9] (p. 2). Accordingly, researchers are encouraged to prepare in advance by selecting or developing tools and protocols that are sensitive to the specific traumatic experiences that may be present in the participant population to safeguard well-being and improve the quality of the research outcomes [9].

Carpenter [25] also advises researchers “[i]f you are conducting face-to-face interviews with people and discussing issues relating to experiences of stigma, discrimination, and forced or coercive medical practices, your research must be trauma-informed and consider how to support your interviewees after the session” (n.p.).

From a clinical research perspective, Haghighat et al. [95] emphasize the need to implement a trauma-informed approach in a qualitative study, arguing that:

From the lens of our participants’ stories, a trauma-informed approach includes further education and sensitivity regarding intersex individuals’ history and lived experiences, normalization and depathologization of their variation, prioritization of bodily autonomy, and facilitation of access to care and community. Following a trauma-informed model would allow clinicians to earn the trust of their intersex patients to promote safety and empowerment. To address prior trauma and isolation, participants emphasized the importance of being connected with mental health resources and support groups.

[95] (p. 7)

4. Ethical Concerns

With the increasing volume of research involving the intersex population, from the conversations that I had with the participants, I observed a sense of saturation among them regarding participation in qualitative studies, especially when there is no compensation offered in return. While my project offered psychological support and access to support networks if needed, some participants expressed a desire for additional forms of compensation, such as financial remuneration. Recognizing the value of participants’ time, I encountered an ethical dilemma regarding the recommendation of not providing economic compensation in qualitative research [96] and the participants’ expectations for some form of recompense for their contributions.

5. Conclusions

This article has presented two sets of ethical principles for intersex-related research, grounded in a comprehensive literature review and qualitative fieldwork study. The first set of principles focuses on the protection of participants, emphasizing the need to avoid redundant research, promote trauma-informed and respectful interview processes, and ensure ongoing negotiation of the research relationship through attention to confidentiality and self-determination. The second set of principles is directed toward researchers and their preparation, highlighting the importance of emotional resilience, reflective practice, trauma-informed training, and cultural sensitivity.

These principles respond to ongoing ethical gaps identified both in the literature and by interview participants and contribute to efforts to foster research that is not only methodologically rigorous but also attentive to the historical and structural dimensions of human rights violations. They also engage with international standards and activist demands, advocating for community-based approaches that prioritize the lived experience of intersex individuals. Although developed within the context of intersex-related studies, the recommendations are potentially transferable to other research fields involving historically marginalized or traumatized populations.

Ultimately, this paper underscores the urgency of transforming research practices to center on care, accountability, and justice.

On a personal note, conducting this research has revealed the emotional weight carried by both participants and researchers. Despite receiving some training, I found myself unprepared to fully manage secondary trauma, vicarious trauma, and the emotional intensity of the fieldwork. This experience has reinforced the need to prioritize researchers’ well-being and to integrate structured moments for reflexivity and ethical self-assessment throughout the project timeline. These practices should be valued equally with other methodological stages, not as optional add-ons but as ethical imperatives. I hope this work contributes to a more reflective, respectful, and human rights-based approach to research (one that listens, learns, and commits to doing better).