BJOG: “Service users’ experiences of obtaining and giving information about disorders of sex development”

Many intersex people have problems getting information about past medical procedures they have been subjected to. It is not unusual for medical practitioners and other self-appointed stake-holders assume complaints about the routine concealment of historical interventions are only made by activists and troublemakers. It makes the complaints easy to dismiss.

This study of a significant sample of 126 invited individuals with confirmed intersex traits that validates those complaints. It should be a wake-up call to health professionals – the deception and denial can put life at risk. All too often adults who have not been informed about interventions on their infant bodies, suffer serious health problems in organs they and their physicians are not aware of and consequently do not know should be tested.

Population:

One hundred of 126 people with a confirmed diagnosis of DSD who were invited to participate in the study formed the usable sample.

Methods:

All people who attended clinic for follow-up during the study period and members of a patient support group whose annual meeting fell within the study period were asked to complete the Middlesex Communication Survey.

Results:

Younger participants were more likely to report having been appropriately informed about their diagnosis than older people. Nearly half of the former had been fully informed about their diagnosis by age 15 years, compared with 0% of the older age group. In terms of information sharing, mothers were most likely to be the person with whom the participant had shared (almost/all) DSD information (74%), followed by current partners (71%). Information relating to genital surgery, presence of testes and clitoral anomalies were the least likely aspects to have been unambiguously shared with even the most informed person.

Conclusions:

Our results suggest that difficulties in obtaining DSD information from care providers were common, and that communication has improved for younger participants. The study also confirmed that many people with DSD continue to struggle with confiding, even in those closest to them, about aspects of their diagnosis. Care protocol needs to centralise psychological adaptation, which should also be a primary focus for future research.

OII Australia adds our standard objection to the use of DSD terminology.

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