Evidence map›Paper›PMID 40313086›Full record

ArticleJournal of genetic counseling2025

Patient care practices for LGBTQ+ individuals in clinical genetics: A scoping review.

Kimberly Zayhowski, Kayla Horowitz, Molly Bostrom, Kathleen F Mittendorf, Megan Kocher, Jehannine J Austin, Ian M MacFarlane

Abstract readScoping Review
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 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
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

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
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

7 authors.

Kimberly ZayhowskiDepartment of Obstetrics and Gynecology, Boston University Chobanian and Avedisian School of Medicine, Boston, Massachusetts, USA.ORCID 0000-0003-1712-6403
Kayla HorowitzService de Génétique Humaine, Cliniques Universitaires Saint-Luc, Brussels, Belgium.ORCID 0000-0002-8319-2188
Molly BostromLibraries, University of Minnesota, Minneapolis, Minnesota, USA.ORCID 0009-0003-3754-6218
Kathleen F MittendorfLavender Spectrum Health, Vancouver, WA, USA.ORCID 0000-0003-1097-9171
Megan KocherLibraries, University of Minnesota, Minneapolis, Minnesota, USA.ORCID 0000-0001-8200-5144
Jehannine J AustinDepartment of Psychiatry, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.ORCID 0000-0003-0338-7055
Ian M MacFarlaneDepartment of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota, USA.ORCID 0000-0002-0896-1952

Funding

Genetic Counseling Processes Result in Outcomes (GC-PRO) StudyR01HG011916 · NHGRI · UNIVERSITY OF MINNESOTA · PI ZIERHUT, HEATHER · 2022 to 2025
$2.6M
Genetic Counseling Fellowship in Research Training (GC-FIRST)R25HG012322 · NHGRI · UNIVERSITY OF MINNESOTA · PI ZIERHUT, HEATHER · 2022 to 2025
$1.0M
NHGRI NIH HHS R01 HG011916NHGRI NIH HHS R25 HG012322NHGRI NIH HHS R25HG012322
6 · The paper itself

Abstract

Individuals who are LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer/Questioning, and/or have a sexual orientations and/or gender identity beyond cisheteronormative conceptions) face systemic barriers to healthcare, leading to significant health inequities. To address these challenges, genetic providers must better understand and inclusively address LGBTQ+ patient needs. This scoping review aims to map the current landscape of genetic care practices and their inclusivity toward LGBTQ+ individuals. We conducted a systematic search of databases, including Ovid MEDLINE, PsycINFO, and Web of Science, identifying 65 relevant articles focused on LGBTQ+ patient experiences and care practices within genetic healthcare services. Our thematic analysis of the articles highlights three major themes: exclusionary clinical environments and tools, provider biases and educational needs, and patient-reported barriers in accessing genetic services. Many articles underscored the importance of inclusive language and criticized the conflation of sex, sex chromosomes, and gender. A significant focus was on cancer care for transgender and gender-diverse individuals, revealing a need for more data on the effects of gender-affirming care on cancer risk assessment. Moreover, genetic counselors often report insufficient training in LGBTQ+ health needs, contributing to biases and knowledge gaps. Despite increased awareness among providers of the need for inclusive care, LGBTQ+ patients encounter substantial barriers, including medical distrust and limited family health history, which may deter them from disclosing their identities due to the risk of discrimination. This review calls for standardized data collection practices regarding sex-related variables, gender modality, and sexual orientation, alongside specialized training programs for providers. By emphasizing critical areas for research, policy changes, and education, we aim to promote equitable, patient-centered genetic services for LGBTQ+ communities.

Indexed as

Patient CareSexual and Gender MinoritiesFemaleHumansMalegenetic counselinggenetics serviceshealth inequityLGBTQ+scoping reviewsexual and gender minoritytransgender

Identifiers

PMID40313086
PMCPMC12046373

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.