In April 2014, OII Australia made a lengthy submission to the National Health and Medical Research Council (NHMRC) calling for the prohibition of genetic testing to select against intersex traits.
Unfortunately, draft guidelines by the NHMRC support decision making by individual clinicians in defining and screening “serious genetic conditions”. The same language of “serious” “genetic conditions” sadly facilitates the screening of embryos in the UK for the intersex traits 5 alpha reductase deficiency, androgen insensitivity syndrome and congenital adrenal hyperplasia. Chromosomal differences are already widely screened in Australia, and we have some evidence that other atypical sex characteristics are also screened out.
The guidelines under review may also create opportunities for so-called “sex selection”.
This submission outlines not just our opposition to screening against intersex traits, but also a set of principles that might be applied to ensure that genetic screening is not misused in discriminatory ways.
The current NHMRC submission cycle closes on Thursday, 17 September 2015 at 5pm AEST. We strongly encourage supporting submissions.
The NHMRC 2015 consultation:
- OII Australia: 2015 submission on preimplantation genetic testing (PDF)
- Tereza Hendl (24 August 2915) “Choosing children’s sex is an exercise in sexism”
- NHMRC page outlining the 2015 consultation process
The NHMRC 2014 consultation:
We thank the AISSGA, Alastair Lawrie, National LGBTI Health Alliance, and Stella Topaz for making submissions on genetic selection against intersex traits in the 2014 consultation.