Intersex community perspectives on prenatal sex chromosome screening: “It silences intersex”
Bibliographic record
Abstract
Intersex individuals and/or individuals with variations in sex characteristics (VSC)/differences in sex development (DSD), who will be referred to from this point forward as individuals with I/VSC, have sex characteristics that do not fit within the binary framework of sex. This community has historically been marginalized in healthcare due to the pathologization of intersex variations, including nonconsensual sex "normalizing" medical interventions. While previous research has explored the perspectives of individuals who are transgender and/or gender-diverse on counseling about fetal sex chromosomes by healthcare providers (HCPs), there is limited information on the recommendations of individuals with I/VSC for genetic counseling on prenatal sex chromosome screening. Sixteen semi-structured individual interviews were conducted virtually with members of the I/VSC community, a majority of whom identified as gender diverse, about their experiences in the United States and/or Canadian healthcare systems and their perspectives on how prenatal HCPs should counsel their patients on sex chromosomes, sex chromosome screening, and sex and gender. Participants were recruited through social media, and the majority resided in the United States. Using reflexive thematic analysis, four overarching themes were identified: (1) People with I/VSC face medical and societal discrimination; (2) Prenatal sex chromosome screening reinforces the sex binary; (3) HCPs have the potential to influence parental decision-making; and (4) HCPs should affirm sex and gender diversity. Participants expressed that there is a lack of HCP education on both intersex variations and gender diversity that has led to members of these communities experiencing a variety of harms. Our findings suggest that prenatal HCPs have a responsibility to educate themselves in order to provide patients with I/VSC and/or who are gender diverse, as well as their families, with appropriate care. Additionally, participants emphasized that systemic and societal change is necessary for ending the stigma and discrimination that individuals with I/VSC and/or who are gender-diverse face.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.011 | 0.019 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.021 | 0.025 |
| Scholarly communication | 0.007 | 0.005 |
| Open science | 0.002 | 0.013 |
| Research integrity | 0.004 | 0.008 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".