Intersex or Diverse Sex Development: Critical Review of Psychosocial Health Care Research and Indications for Practice

Abstract

Intersex or diverse sex development (dsd) can be conceptualized as an aspect of bodily diversity that has particular psychosocial implications. This is a review of psychosocial health care literature, published from 2007 to 2017, focusing on the well-being of people with a diagnosis relating to sex development. The analysis I offer here takes a critical psychological approach, questioning norms and taken-for-granted assumptions. This approach works from the understanding that how we know and how we talk about a phenomenon affects people in material and life-changing ways. This article offers recommendations concerning health care communication, the importance of taking time for emotion, and the process of building supportive relationships. The research reviewed provides clear evidence of psychosocial harm that is done through genital intervention and evidence that parents do not routinely give fully informed consent before their children undergo treatment. Finally, I highlight key points and recommendations for health professionals, indicating how psychosocial professionals can contribute to health care and well-being in the context of dsd when appropriately resourced and trained.

Acknowledgments

I am grateful to Lih-Mei Liao and Julie Alderson for helping me articulate some of the implications for health services. I am also grateful to editors and anonymous reviewers for extensive comments on earlier drafts.

Notes

¹ The term diverse sex development (dsd) is often used in psychosocial research that is in dialogue with health services but seeks to maintain a critical distance from the medical terminology of Disorders of Sex Development or DSD (Liao & Roen, 2013). Sometimes lowercase initials are used to make this distinction clear.

² The term diverse sex characteristics is used here to refer to the people concerned, rather than referring to the diagnosis, disorder, or developmental pathway. This terminology follows the current usage among intersex advocates who use terms such as intersex characteristics and variations in sex characteristics. The point is to find terminology that is acceptable to those concerned; settling on a single term does not seem likely (Davis, 2014; Delimata et al., 2018; Lundberg, Hegarty, & Roen, 2018).

³ The Prader score is a measure used in medical settings to refer to the extent to which the external genitalia appear to be typically male (scoring 6 on the scale) or typically female (scoring 0 on the scale).