Evidence map›Paper›PMID 38342966›Full record

ArticleJournal of genetic counseling2025

Experiences of hereditary cancer care among transgender and gender diverse people: "It's gender. It's cancer risk…it's everything".

Sarah Roth, Jill Owczarzak, Kellan Baker, Hannah Davidson, Leila Jamal

Open access · bronzeAbstract read
In one paragraph

Article in Journal of genetic counseling, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
3.9field-weighted citation impact, top 7% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

7 citing papers in PubMed, 7 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 3 institutions in 1 country.

Sarah RothJohns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.ORCID 0009-0007-8659-1460
Jill OwczarzakJohns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.ORCID 0000-0003-2380-5533
Kellan BakerWhitman-Walker Health, Washington, District of Columbia, USA.ORCID 0000-0002-9716-7936
Hannah DavidsonJohns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.ORCID 0000-0002-9545-7788
Leila JamalDepartment of Bioethics, NIH, Bethesda, Maryland, USA.ORCID 0000-0003-1132-2411
Johns Hopkins University · USNational Institutes of Health · USWhitman-Walker Health · US

Funding

Clinical Cancer Genomics ProgramZIDBC011908 · NCI · DIVISION OF BASIC SCIENCES - NCI · PI CALZONE, KATHLEEN · 2019 to 2025
$9.3M
Intramural NIH HHS Z99 HG999999NHGRI NIH HHS
6 · The paper itself

Abstract

Transgender and gender diverse (TGD) individuals are a significant yet underrepresented population within genetic counseling research and broader LGBTQI+ health studies. This underrepresentation perpetuates a cycle of exclusion from the production of medical knowledge, impacting the quality and equity of care received by TGD individuals. This issue is particularly poignant in cancer genetic counseling, where TGD individuals with elevated cancer risk receive risk assessment, counseling, and referral to support based on risk figures and standards of care developed for cisgender individuals. The experiences of TGD individuals navigating inherited cancer syndromes remain largely undocumented in medical literature, posing challenges to the provision of inclusive care by genetics providers. To bridge this knowledge gap, we conducted a cross-sectional qualitative study. Nineteen semi-structured interviews were held with gender diverse adults having hereditary cancer syndromes, family histories of such syndromes, or personal histories of chest cancer. Our study employed thematic analysis using combined inductive and deductive methods to illuminate how hereditary cancer care intersects with participants' gender identities, gender expression, and gender-affirming care experiences. Participants reflected on care experiences that felt affirming or triggered gender dysphoria. Participants also discussed the interplay between risk-reducing mastectomy and top surgery, exploring co-emergent dynamics between cancer risk management and gender expression. Significantly, participants identified actionable strategies for healthcare providers to enhance support for gender diverse patients, including the mindful use of gendered language, collaborative decision-making, and conveying allyship. These findings offer valuable insights into tailoring genetic counseling to meet the unique needs of TGD individuals, advancing the path toward inclusive and appropriate care for LGBTQI+ individuals with hereditary cancer syndromes.

Indexed as

Genetic CounselingNeoplasmsTransgender PersonsAdultCross-Sectional StudiesFemaleHumansMaleMiddle AgedQualitative Researchdiscriminationgender identitygenetic counselinghereditary cancer carelived experiencerisk management

Identifiers

PMID38342966
PMCPMC11316848
OpenAlexW4391750381

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.