Yann Joly

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Articles (11)

Intersex individuals, encompassing people with diverse sex characteristics that do not fit binary frameworks of sex, have long faced a history of medical secrecy, discrimination, and societal stigma, contributing to their limited social visibility. In recent years, increased awareness of intersex issues and a robust advocacy movement have drawn significant attention to the experiences of intersex individuals and their families. This study contributes to the existing literature by examining the experiences and needs of parents of intersex individuals within genetic healthcare systems, bridging a critical gap, and advocating for more comprehensive and supportive healthcare practices. Semi‐structured interviews were conducted with 14 parents of intersex individuals, and reflexive thematic analysis was used to inductively generate four major themes. Themes highlighted the need for improved accessibility of intersex healthcare, the importance of multidisciplinary healthcare teams, and the significance of clinical diagnosis provided by genetics professionals. Furthermore, the study highlighted the necessity of a thoughtful approach to information provision and the impact of genetic investigations on family dynamics. Genetics professionals can play a pivotal role in raising awareness about intersex variations, improving diagnostic processes, collaborating within healthcare teams, and providing specialized support to address psychosocial concerns. The study underscores the importance of treating families as a collective entity and addressing the impact of genetic investigations on the family unit. By addressing the challenges and implementing the recommendations outlined, healthcare institutions can create a more compassionate, inclusive, and effective healthcare environment for the intersex community.

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2024

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2024

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2023

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2023

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2022

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2022

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2021

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2021

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2020

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2020

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2020

Collaborators (7)

Kimberly Zayhowski

Boston University School of Medicine

UNITED STATES
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Guillaume Bourque

McGill University

CANADA
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Robert Sladek

Associate Professor

McGill University Faculty of Medicine

CANADA
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Pierre Gagnon

Directeur et professeur titulaire

Laval University

CANADA
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Ian Charest

Professeur adjoint

Université de Montréal

CANADA
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Alison Berner

NIHR Academic Clinical Lecturer

Queen Mary University of London

UNITED KINGDOM
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Torsten Voigt

Professor and Chair of Technology and Diversity Program

RWTH Aachen University

GERMANY
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