Inside the doctor's office. Talking about intersex with Italian health professionals

Abstract

This article explores how health professionals in Italy understand variations of sex characteristics (VSC), also referred to as intersex and/or disorders of sex development (DSD). With estimates of VSC frequency ranging from 0.018% to 1.7%, only a handful of highly specialised medical doctors are considered DSD experts. When addressing the daily health management of children and families who do not live near specialist DSD centres, these experts may refer individuals to the nearest health professional that Italian health services provides, opening up questions regarding how these professionals might act and react when faced with VSC. In this analysis of interview data from 65 Italian general practitioners, paediatricians and psychologists, we address two themes. The first theme discusses participants’ previous experiences and case management, with a focus on social, medical and gender biases. The second theme examines health professionals’ opinions and perspectives on ongoing conflicts concerning current best care practices. Our results highlight health professionals’ cultural and gendered biases, confirming the need to develop specific professional training, guidelines and policies to improve the healthcare of people with VSC.

Keywords:

• Intersex
• health care management
• gender bias
• health education
• Italy

Acknowledgements

We thank Francesco Angileri, Alma Occhiucci and Dario Serre for their help conducting the interviews and during the early stages of data analysis We also thank Daniela Crocetti, Surya Monro and the journal’s anonymous reviewers for their careful reading and their many insightful suggestions.

Disclosure statement

The authors declare no potential conflicts of interest with respect to the research, authorship and/or publication of this paper.

Notes

1 Although we are aware that terminology is still a contested issue (Delimata et al. 2017; Davis 2014), we use the term “variations of sex characteristics” (VSC) rather than the better known and disputed categories such as “intersex” or “disorder/differences of sex development” (DSD).

2 The research group consisted in two supervisors (the authors), two research assistants and three students (interviewers).

3 First described by John Morris, the currently accepted medical terminology is Androgen Insensitivity Syndrome (AIS).

4 Scholars have described the emotional and psychological harm of the widespread use of medical photography in this context (Creighton et al. 2002).

5 The classification of intersex/DSD/VSC is a debated issue both among healthcare professionals and VSC persons. Regarding sex chromosomal variations, it is important to underline that not all persons with Klinefelter syndrome identify as intersex, nor does the medical community agrees on the inclusion of Turner and Klinefelter syndromes in the DSD classification.

6 I am interested in all those conditions related to a congenital anomaly/variation of the reproductive system and sex development. Have you ever encountered such conditions?