The following complaint was filed electronically to both the University of Florida and the University of Arizona after we received communication from a parent, who shared with us unprofessional communication (see below) that she received after articulating her personal concerns about the survey in an email to the principal investigator of the research study.
The study can be viewed here: https://uarizona.co1.qualtrics.com/jfe/form/SV_0lh8dWcxQ7VtOgC?fbclid=IwAR1tjULgRNFOo5SfXW5nMHNjPH0cli5C7jbHDgS0WtaUbNx5WOwzeA7G_7E
February 18, 2021
Dear Ms. Farley/Ms. Hammel,
Partners for Ethical Care would like to lodge a formal complaint regarding the study “Experiences of Parents and Caregivers of Transgender and Non-Binary Youth Study in the U.S.” co-sponsored by University of Florida. The study is authored by Drs. Russell B. Toomey and Robert Abreu of University of Arizona, whose office has also received this complaint. We have specific concerns about definitions assumed within the study, researcher bias, risks to human subjects, and methodological flaws.
Definitions:
The study seeks to determine the level of support that parents in general receive regarding their trans-identifying and/or dysphoric children. However, it does not define the very subject it seeks to understand–support. Instead, it begins with an assumption that all gender-affirming therapy (i.e., affirming the opposite sex as the child’s gender identity) and medical interventions provided to children, with or without parental consent, would be considered “support” of the child, and therapeutic to the struggle with dysphoria. However, support and affirmation are not synonymous. If the study seeks to understand to what extent our schools are affirming a child’s gender identity and directing kids toward a gender transition, that is a different question and should be phrased differently; “support” should be defined for the participant to increase the validity of the results.
Conflating support for children with gender affirmation not only lacks rigor but also confuses the participant by implying that there is only one way to support his or her child. In this way, the study is also administering family therapy (i.e. suggesting a specific therapeutic intervention for the child) to the participant without warning or consent, and with no evidence of its efficacy.
Nomenclature:
Scientific surveys from accredited academic institutions like yours should not be written with ideological language. Therefore, this document should use only scientific descriptions. Instead of using words like “gender identity” or “true gender,” use non-ideological terms like “gender dysphoria” or “a feeling of incongruence with one’s sex (or the sex-ed body).”
Moreover, the phrase “trans child” is poorly defined, especially in relation to the diagnosis of gender dysphoria, which seems to be wholly unrelated to an identification as a “trans child” within the study. A clear definitional distinction between a child diagnosed with gender dysphoria and a trans-identified child is needed. The ideological language may inhibit respondents from answering according to their own experiences and beliefs. One parent participant reported that she felt like she was “committing a thought crime” while filling out the survey. For example, the phrase “trans child” assumes some sort of innate biological characteristic, and as such, using the phrase “transgender-identified child” is recommended.
Bias:
In addition to conflating “support” with proactive affirmative interventions, this study formulation prevents the respondent from discussing the ways in which school interventions might be harmful or anti-therapeutic. As a result, the study only allows the answers to confirm the political biases toward an affirmation-only approach, lobbying efforts toward affirmation-only social and medical transition, and fundraising goals to support the mission of the study’s co-sponsor Human Rights Campaign and presumably the study authors.
That conflict is shown by the fact that respondents can only express 1) whether they need more active interventions to help their child transition, or 2) that they are well supported by the current interventions. There is no option for families to express their negative experiences with schools’ affirmative interventions on behalf of their kids. There is no way for parents to express the need for other types of support (i.e., exploratory therapy that does not include social or medical transition) for their children that might ease the feelings of dysphoria–or even resolve it altogether. There are no questions that address the needs of children who have desisted or detransitioned. There are no questions about desisted or detrans children who have been socially-influenced back into a trans identity by other trans-identified children or school personnel. There is no opportunity for parents to answer in a way that reflects the help they need, unless it adheres to the assumptions of HRC. The only options for these responses is through the comment boxes at the end, which will not be tallied and quantified in the same manner as the other questions.
Here are some examples of statements from parent participants:
Throughout the survey, as it asked for “very supportive” to “very unsupportive.” I wasn’t sure what to put. Like, I totally support my child, without fail. But I don’t believe in gender. I don’t support those ideas. And in reality I’ve only asked her questions. So I put “neutral” over and over.
The way they described surgeries and hormones like they were a default minimum of care was really shocking…, not one mention of watchful waiting. No mention of natural desistance. Not a hint of “identity exploration” or the general crises of adolescence. The writers are flying blind, in my opinion.
Additionally, some questions make assumptions that events have occurred when such cannot be assumed, and there is no ability for the participant to dispute the premise of the question. For example,
How old was your child the very first time you noticed that they showed/exhibited any gender non-conforming behaviors?
Who bullied or harassed your child?
There is no option for a participant who has a child identifying as transgender to state that the child has never “showed/exhibited any gender non-conforming behaviors” nor is that phrase definined, eliminating any validity to the responses. Similarly, participants have no option to dispute the premise of the other question referenced above, and it is not clear why the study authors assume that every participant’s child has been bullied or harassed. The words “bullied or harassed” are not clearly defined for the study participants, again significantly reducing the validity of the measure.
When one parent raised these concerns with the authors of the study, s/he was rejected as a “well-funded, anti-trans” hate group [see attached email], though s/he has no such group affiliation and is just a parent-participant in the study. That dismissive and defensive response does not reflect the scientific rigor and research integrity that we expect from University of Arizona and University of Florida.
Participant Safety and Consent:
It is the responsibility of the Institutional Review Board to ensure that human subjects are protected. In the case of this survey, that has not occurred. It is stated at the beginning of the survey,
Are there any risks or discomforts of being in this study?
There is nothing bad that will happen to you, but you might feel uncomfortable with some of the questions that the researchers may ask you. You can skip any part of the research activities at any time. While questions are not of a distressing nature [bold added], you might experience distress and wish to seek mental health support.
In the survey, two emotionally disturbing questions are asked, referring to suicidal ideation and/or attempts of the participant’s child and/or the parent-participant.
Has your trans child ever been hospitalized for mental health needs?
Over the last 2 weeks, how often have you been bothered by any of the following problems?
Thoughts that you would be better off dead, or of hurting yourself
Assuming that questions about suicide would not be distressing grossly underestimates the impact of suicidal ideation and suicide attempts on the life of a parent. Implying that the possible loss of life of a child or self is “not of a distressing nature” misjudges the impact of these questions on the mental health of participants in this study.
In addition, research should be designed to ensure the data collected will be valid and reliable. There is clear researcher bias toward a singular treatment approach to gender dysphoria and/or gender non-conformity. The survey instrument is designed to elicit answers that confirm inaccurate researcher assumptions. This survey relies on self-reports from a snowball sample reaching an audience of participants who cannot participate honestly in this study. For all of the aforementioned reasons, the results of this survey will not serve to increase our understanding of parents' need for resources and support for children who experience gender dysphoria, which is the stated goal of the study.
We believe that the role schools can play in supporting children who are struggling with dysphoria is an important area of study. Understanding the ways in which schools are offering therapeutic interventions, possibly even participating in psychosocial treatment of children without the proper license or consent, could even worsen the experience of dysphoria and trigger self-harming behaviors. Assessing the experience of parents objectively, without political or ideological bias, is vital to our approach to helping children. Your office, as well as Drs. Toomey and Abreu, would do well to consider this topic more critically before approving a research design that has such serious implications for participants and the quality of research necessary to benefit the children and families who are being affected every day, in increasing numbers, by gender dysphoria. The Society for Evidence-Based Gender Medicine (www.segm.org) is an excellent resource for these researchers to contact as they look for guidance on this topic, and we encourage your study authors to reach out to them.
University of Arizona and University of Florida are well-respected institutions. We know you will want to maintain your high reputations for scientific rigor and unbiased inquiry. However, to obtain honest, non-ideological information about what gender dysphoric children and their parents need, you may consider conducting a study without the partnership of an ideological, activist organization with a clear political and financial agenda.
We also request that you put an immediate halt to Drs. Toomey and Abreu’s study given the serious ethical concerns detailed in this complaint. If these researchers or individuals affiliated with the University of Arizona, University of Florida, and this study would like to speak with an organization that works with professionals and parents around the issue of gender identity, we welcome that communication.
Thank you,
Partners for Ethical Care
Partners for Ethical Care is a non-partisan, all-volunteer, grassroots, 501(c)(3) not-for-profit organization comprised of individuals from across the globe. Our mission is to raise awareness and support efforts to stop the unethical treatment of children by schools, hospitals, and mental and medical healthcare providers under the duplicitous banner of gender identity affirmation. We are funded by individual donors, and we are humbled by their generosity.
Letters were addressed to the following individuals and associated individuals were copied on the complaint.
Cassandra Farley, Director & Research Integrity Officer
Research Integrity, Security & Compliance University of Florida 236 Grinter Hall PO Box 115500 Gainesville, FL 32611-5500
Courtney Hammel, Assistant Director
Human Subjects Protection Program
University of Arizona
PO Box 210066
Administration Building, Room 601
Tucson, AZ 85721
Comments