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Ethics, disability and the case of Ashley

January 5th, 2007

Dr Petra

You may have seen the discussions in the news about the case of 9-year-old Ashley, an American girl who will be having her breast tissue and uterus removed as well as hormone treatment to prevent physical development. Ashley is disabled so her parents felt moving through puberty; body changes, periods and the risk of pregnancy were appropriate for their child and would harm her quality of life.

Within the US and elsewhere this has sparked a number of debates around the issues of ethics, sexual development and disability. While I sympathise with any parent facing the task of challenging or difficult child rearing, the case of Ashley does raise a number of issues in medical ethics. Usually parents would put a case to an ethics committee – a panel of experts who would carefully discuss the options. Some critics have argued in this case that other medical options – such as using the pill or contraception injections have not been used in favour of a surgical intervention. They’ve also challenged why no advocate appeared to speak on behalf of Ashley or gave an alternative viewpoint to her parents.

Clearly this is a very difficult and emotive topic. Cory Silverberg highlights many of the ethical and political challenges the case raises.

Perhaps one thing we can hope for from this case is to highlight the pressures and positive issues facing parents of severely disabled children. It may also enable a wider debate on issues around sexuality and disability – not just physical development but wider topics including sex education, sex surrogacy, concerns over sexual abuse, and sex positive resources and support for disabled people.

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