“These Researchers Think They Come From Heaven with Analytical Superpowers When They Don’t”: A Qualitative Analysis of Research Experiences in Intersex-Related Studies

Round 1

Reviewer 1 Report

Thank you for sharing this article, it provides an insightful contribution to intersex studies by looking at various key aspects of qualitative intersex research: the research design, participation process, and ethics. These aspects have been given little focused attention in publications to date, so this article makes an important intervention. The authors also do well to give thoughtful attention to their own methods and a careful and conscientious approach to their participants. However, there are some ways in which the structure, focus and analysis of the article could be strengthened:

Introduction

This section needs to be developed in various ways, particularly the lack of an academic literature review. Whilst I agree that there are limited examples of similar research to this,  you should give some attention to related studies/approaches. This may include the few contributions within intersex studies (e.g. Jones’s (2022) This Is What I Am and Who I Am': Exploring Authorship and Ethics in Intersex Research) or some attention to how researchers’ allude to ethics/methodological approaches in their broader intersex articles. You should also look at research outside of this field, where the literature on ethics and marginalized communities is vast (e.g. Adams’ et al. (2017) Guidance and Ethical Considerations for Undertaking Transgender Health Research, Vincent’s (2018) Studying trans: recommendations for ethical recruitment and collaboration). Whilst the studied group is different in these articles, this literature will be useful for positioning your study and its intentions. Other studies on the experience of research participation and/or experience of undertaking qualitative research would also be helpful to explore here, regardless of the population.

The introduction also needs to be re-structured. It should start with a broader context section. At its outset, the reader needs to be told what kind of issues need to be considered for intersex research/participants. Why is this study so critical for this population in particular? Clearly outline why the research needs/approach are/should be different from other populations - provide an initial context. I recommend moving the discussion about Koyama's, ISNA’s and InterACT’s recommendations from the findings section into the introduction to help provide this context.

In the introduction, the authors mention five ethical guidelines reviewed for this study. They then provide a very brief review/analysis of these and don’t return to them again. This could be a dataset of its own, but it’s not clear what this brief overview adds to this specific article, especially as there is no further discussion of it in the results or findings section. Consider whether this is needed at all. If it stays, it should be brought in later so that the specific focus of this article is clear and outlined first of all.

Epistemic injustice and violence are great frameworks here, but these should be sustained throughout the article to give deeper insight and a stronger narrative thread. In their initial mention, the author should also explain exactly how they relate to intersex issues.

The introduction (and some other parts of the article) are very quote-heavy. Consider whether all lengthy quotes are necessary in their entirety, and/or whether some of these extracts could be summarized in your own words.

Materials and methods

Have you collected the demographic details of the participants? It would be helpful to know more about their diversity, the region they live in, the researchers’ career stage and disciplines. All these variants will have an impact on their experiences and perspectives.

There is no comment about positionality from the authors. It’s their decision what feels comfortable to share here. Beyond personal/identity aspects, they could also share whether they’ve undertaken qualitative research with intersex people or other population (prior to this study) and/or been a research participant themselves.

175 - The authors mention that 9 of the researchers had also been research participants. This should be clearer – I assume this means participation in intersex research and that these researchers are all intersex themselves? This is a distinctive perspective and could be highlighted further (with connections made to relevant literature).

179-180 – Mention what you mean by a ‘human rights-based approach’ when this is first discussed.

192-193 – Clarify if the project pays for these psychotherapeutic sessions.

Results

It is understandable that the authors want to avoid interpreting the participants’ experiences, however some interpretation is perhaps unavoidable/necessary (as seen in the findings section).  I would recommend a short overview paragraph at the end of each theme, beneath the list of quotes. This would allow you to draw together the ideas expressed and engage with the complexity of their accounts. In the ‘Informed consent’ theme, I would recommend using the paragraph to briefly highlight the specific relevance of this issue to intersex. You do this in the findings, but this needs to come earlier.

Findings

A theoretical or conceptual framework would help to draw together these themes and analysis. The discussion of epistemic injustice/violence that you mention in the introduction is only briefly mentioned again. Consider using this as a framework to examine and explore the ideas raised by your participants in more depth in the findings section.

Related to the language themes, there’s been a lot of literature on this that would be more relevant to explore than Hester and Dreger (e.g. Lundberg et al.’s (2018) Making sense of ‘Intersex’ and ‘DSD’: how laypeople understand and use terminology, Davis’s (2011) “DSD is a Perfectly Fine Term”: Reasserting Medical Authority through a Shift in Intersex Terminology, etc).

419-422 – Your surprise needs some explanation here. The participants are asked for self-reflection so perhaps this is inevitable. Is it their perspectives on positionality that were unexpected?

I want to note that this article has lots of potential and I’m really glad to see this important work! With these changes, I believe its originality will be stronger and clearer.

Mostly well written, but some typographical and grammatical errors.

Author Response

Please see the attachment. 

Author Response File: Author Response.pdf

Reviewer 2 Report

This paper is an excellent contribution to a burgeoning literature in critical intersex studies. The analysis is valuable and interesting and fills a gap in the literature on ethical issues in research on people with intersex variations. 

The material is rich, insightful and important. The methodology is sound. the analysis provides a wonderful grounding that should inform all research on intersex issues. 

The research centers intersex voices, which is so important in this research field. 

The written expression is eloquent but there are minor grammatical glitches throughout. I would imagine that English is the second language of the author, though the paper is immensely readable, and the grammatical errors are very minor. Nevertheless, the article would benefit from a thorough edit to polish up the English expression. 

I have no hesitation in recommending this for publication subject to that editing process. It will provide a very valuable and important contribution to the field. 

The written expression is eloquent but there are minor grammatical glitches throughout. I would imagine that English is the second language of the author. However, the paper is immensely readable and clear, and the grammatical errors are very minor. Nevertheless, the article would benefit from a thorough edit to polish up the English expression. 

Author Response

Please see the attachment 

Author Response File: Author Response.pdf