‘That decision really was mine…’. Insider perspectives on health care controversies about intersex/diverse sex development

Abstract

After 20 years of debate on intersex care, there has been a slight movement away from the paradigm of ‘optimal gender’ including early genital modification to conform to predicted gender identity towards a paradigm of ‘full consent’ including the provision of full information about the risks, benefits and alternatives to interventions and the postponement of irreversible interventions on minors too young to give informed consent. However, controversy continues. Against this background, the aim of this study was to analyse core aspects of current debates in intersex care. Focus was placed on controversies about surgery on external genitalia; gonadectomies; the expressed wishes of patients under the age of consent; and how to deal with intersex within the family. Eight guideline-based interviews were conducted with two people with intersex/diverse sex development conditions who had been subjected to surgery, two parents of children with an intersex/dsd condition, two medical doctors, and two psychologists. Data were analysed thematically. Findings indicate that while ‘full consent’ influenced actions and debate, the persons involved held differing opinions about how this policy can or should be achieved. In addition, the data illustrated how concepts such as normalcy, identity and sexuality are relevant when dealing with intersex issues.

Keywords:

• Ambiguous genitalia
• disorders of sex development
• genital surgery
• gonadectomy
• intersex
• psychosocial care

Acknowledgements

We thank the interviewees for their willingness to participate. We also thank Leila Josua for assistance with the research project, Catherine Schwerin and Elaine Balkenhol for language advice, the reviewers and editors for their valuable comments, and Alexander Redlich for being a supervisor of the research process.

Disclosure statement

The authors report no conflicts of interest.

Notes

1 This term describes ‘an intervention to alter a bodily state’ as being ‘medically necessary when (1) the bodily state poses a serious, time-sensitive threat to the person’s well-being, typically due to a functional impairment in an associated somatic process, and (2) the intervention, as performed without delay, is the least harmful feasible means of changing the bodily state to one that alleviates the threat’ (The Brussels Collaboration on Bodily Integrity 2019, 18).

2 Here referring to ‘(1) medically unnecessary acts of (2) genital cutting that are (3) overwhelmingly performed on young children (4) on behalf of norms, beliefs, or values that may not be the child’s own and which the child may not adopt when of age’ (The Brussels Collaboration on Bodily Integrity 2019, 21).

3 The Prader scale describes the degree of masculinisation in cases of genital ambiguity. Prader III stands for an ‘increased phallic size with complete labioscrotal fusion forming a urogenital sinus with a single opening’ (Rink, Adams, and Misseri 2005).

Additional information

Funding

This study was funded by Behörde für Wissenschaft, Forschung und Gleichstellung der Freien und Hansestadt Hamburg as a part of the Intersex Controversies project conducted by the Hamburg Open Online University (HOOU).