Everything you wanted to know about the DARE study
The DARE study's first paper has been accepted and will be published in the coming months. Here's a brief break-down of the study's main objectives and its research design
Detransition and transition “regret” have been written about in the academic literature, at least a little bit, since 1966, when Dr. Harry Benjamin published The Transsexual Phenomenon. In 1998, the first formal study focused exclusively on detransition/regret (among adults) was published. The authors used several recruitment approaches to track down who they called “regretful” patients, such as taking out ads in local newspapers, putting out feelers with local trans support groups, and word-of-mouth via gender clinician networks. They managed to recruit and interview 10 participants (9 trans women/assigned males and 1 assigned female).
The DARE study, conducted 25 years later, used similar approaches to reach a wide group of people living in Canada and the US, but with the added benefit of utilizing internet-based advertising across social media (as opposed to newspaper ads)!
Of course, a lot has changed with regards to how we think about sex/gender and transgender medicine since then. As a result, the DARE study design reflects today’s far more inclusive and gender diverse sexual and gender minority populations. More on the study design will follow below.
Between the 1990s and 2021, there were a few studies that reported some data on detransition/regret, but not much, outside of a few surveys and analyses of administrative healthcare databases. This was particularly true of Canada and the US. While there was an informal survey for detrans women conducted on Tumblr in the mid-2010s, 2021 marked the year that many more academic, peer-reviewed studies on detransition started to be published. Here’s the search results on PubMed for the term “gender detransition.”
One was by Vandenbussche (2022) (a detransitioned woman) and the other was by Littman (2021). An additional and highly-cited study estimating detransition/retransition among trans people led by Turban et al. was also published in 2021.
Today, there are a growing number of research projects focused on detransition/retransition. Here’s a previous post about some of them.
The DARE study builds from, and fits into, this more contemporary research landscape, aiming to add new knowledge to preliminary theories developed from prior survey-based research.
To date, it is the largest (in terms of the sample size) community-engaged effort to study people with experiences of detransition, identity fluidity, regret, and/or retransition in North America.
It is funded by the Social Sciences and Humanities Research Council, which is a federal research organization in Canada.
Detransition Analysis, Representation, and Exploration (DARE)
The DARE study was designed by LGBTQ+ researchers to understand the emerging socio-medical phenomena of detransition and other experiences that may relate to it (such as identity shifts post-transition, regret, or retransition).
Because very little research has been conducted on detransition/regret in the past 25 years, the study’s main goal was to develop better understanding and to build new knowledge.
The study’s primary objectives were to:
Identify and quantify different pathways leading to detransition (stopping, shifting, or reversing a gender transition).
(This meant that we asked participants to report on multiple reasons that may have contributed to their decision to detransition, such as medical complications, mental health factors, discrimination, identity changes, or feeling satisfied with treatments.)
Understand the care and support needs of people with these life experiences (and care that is more sensitive to diverse needs).
(This meant that we asked participants about their experiences with the gender care system, mental health providers, and so on, with regards to their transition and their detransition. We also asked for recommendations on how to make improvements in care and what they would have needed, if anything, to support them through transition and/or detransition.)
To achieve these objectives, two types of data were collected: quantitative and qualitative, making it a mixed-methods study.
Participants were first surveyed, and then a subset of those who took the survey were invited to partake in qualitative, in-depth interviews over Zoom.
To be eligible to take the DARE survey participants were:
Aged 16 or older.
Living in Canada or the US (confirmed via IP/geolocation).
Self-reporting having stopped or reversed some aspect of a gender transition (social, legal, and/or medical) OR a desire to detransition but feeling unable to take any steps.
Able to answer the survey in English, French, or Spanish.
More about the DARE study team and community-engagement efforts
Led by Canadian researcher Kinnon MacKinnon, the full research team is composed of a majority LGBTQ+ researchers trained in social work, public health, and psychiatry—the team is mostly trans, queer, and detransitioned Canadians. However, we also have a couple of token Americans among our ranks!
The full team, including research assistants, has included 11 people in total, and it continues to grow as we move into the qualitative analysis stage! We also had a couple of international PhD students join the project for temporary visits (such as The One Percent co-author, Pablo, and Kirsty Rackliff, who wrote this great analysis called The Ideal Detransitioner).
From its early stages, the DARE study implemented community engagement with trans, nonbinary, and detrans folks, such as involving a detransitioned project consultant and by polling people to select a formal study title. The study title was narrowed down from 4 options and voted on by the research team members and an additional 6-8 detransitioned people from our own social networks. So that’s the history of its name.
The survey was also pilot tested by the research team, as well as several additional trans people and detransitioners (including nonbinary detrans folks).
It was a key aim to ensure that the survey was designed in such a way to be inclusive of the full range of detransition/retransition experiences, rather than exclusive to only one way of understanding detransition. This was to avoid developing a biased survey instrument that might unintentionally exclude experiences or deter people from taking the survey who could relate to detransition/retransition phenomena.
The DARE study’s first paper is forthcoming
After nine months and two rounds of peer review, the study’s first paper has finally been accepted! It should be out within the next 1-2 months. Once it’s officially published, we’ll post a brief summary of it here on The One Percent, so be sure to subscribe to stay up to date.
The upcoming paper being published by the Journal of Medical Internet Research is aptly titled: “Sampling with Sisyphus: Introducing novel methods to recruit 2SLGBTQ+ populations for a web-based survey and to identify fraudulent responses.”
You can guess from the title what the paper is about…
That’s right: it’s about the steps the study team took to sample a diverse group of eligible people, and the laborious efforts taken to weed out bots/frauds/scam survey responses to ensure that we have a high-quality, reliable dataset of respondents who were actually eligible to take the survey. Here’s a quick preview:
We developed a pretty robust protocol to identify bots/scam/invalid responses, which is in itself a big contribution to survey-based research, because all online research is dealing with this issue. It’s become especially bad since COVID-19.
Developing this “scam screening protocol” was a very, very important first step. It took considerable effort and problem-solving (and additional, unplanned time and grant $$ in terms of personnel and labour).
But in the end, it was absolutely worth it to increase our confidence that we had higher quality survey data that is likelier to be more reliable and trustworthy than most surveys conducted online these days.
You’ll have to wait a little longer to see the full paper. In the meantime, you are welcome to check out a couple of short presentations of preliminary DARE study results that were recorded for conferences here.
Please feel free to put any questions about the study in the comment section.
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