Australian Intersex Outcomes Study

Classification: News


Saturday, June 24, 2000



The Androgen Insensitivity Syndrome Support Group Australia (AISSG(Aust.))
is a peer support group providing information and support to people with
AIS and their families. Whilst not our primary function, one of the aims
of the AISSG(Aust.) is to increase awareness in the general medical community
of the personal issues faced by people with AIS.

The AIS Support Group is opposed to any unnecessary medical intervention
when treating any intersex condition. Having said this, the AISSG(Aust.)
recognises there is still considerable debate over what constitutes "necessary
medical intervention" in such cases. The AISSG(Aust.) also recognises
that what was considered by most paediatricians and surgeons as best practice
for medical intervention 30 years ago may not be considered by some clinicians
to be best practice now. The AISSG(Aust.) is therefore of the opinion that
any clinician moving in a positive direction to influence or change best
practice to improve the regimes for treatment of children with intersex
conditions should be supported.

Members of the AISSG(Aust.) have been working with the Royal Children's
Hospital Melbourne (RCH) in an attempt to assist the identification and
implementation of world's best practice for the treatment of children with
intersex conditions. Earlier this year, the RCH announced its intention
to undertake an extensive bioethics study including 200 follow-up studies
of children with intersex conditions who have undergone some level of medical
intervention. The intended Bioethics study has formalised arrangements with
the AISSG(Aust.) to assist identification of best practice for the medical
management of children with intersex conditions. The AISSG(Aust.) hopes
that such initiatives that include both clinicians and support groups will
be seen by other medical centres world-wide as the only way of ensuring
that the needs of patients, their parents and clinicians are met adequately.

Prof. Garry Warne of the RCH is a keen advocate of the AISSG(Aust.) and
was instrumental in its formation in Australia. He constantly avails himself
to the AISSG(Aust.) and its members. For the past 15 years, Prof. Warne
has been advocating full disclosure of the nature of such conditions to
children born with intersex conditions and their parents, despite the fact
that other clinicians worldwide still resist such disclosure. It is largely
through the efforts of Prof. Warne that the planned RCH Bioethics study
is to take place. A constant throughout discussions between the AISSG(Aust.)
and Prof. Warne has been his keenness to listen to the personal experiences
of members and learn from them.