EU-funded project makes recommendations to protect rights of intersex people

Intersex people are born with chromosomal, hormonal and/or anatomic variations that deviate from what is typically defined as male and female. In much of the world, current medical practice focuses on irreversible cosmetic genital surgery so that minors conform to a specific gender. However, these procedures can leave long-term physical problems and psychological scars.

The EU-funded INTERSEXIONS project investigated the medical, legal and social practices adopted in cases of intersex variations, with a focus on Italy. It addressed how medical practices and guidelines have changed over time, as well as their consequences on people's lives.

Key results include a series of recommendations for Italian policymakers and the medical community aimed at protecting the human rights of intersex people; and a map of intersex organizations as a resource for those affected.

"In the medical community, nationally and internationally, some serious doubts about current clinical protocols have been expressed but those who speak out publicly are very few," says lead INTERSEXIONS researcher Michela Balocchi of the University of Verona in Italy.

New guidelines for policymakers

A number of key points emerged from Balocchi's research, such as the gap between current medical practices, their effects on intersex individuals and families, and what intersex activists and patients' organisations ask for in terms of healthcare and human rights. In particular, the international intersex movement has advocated against unnecessary, non-consensual surgery and pharmacological treatments.

Balocchi has drawn up guidelines and recommendations for European policymakers covering intersex issues, and is proposing new bioethical guidelines for Italian regions to prevent unnecessary genital surgery.

One of her long-term goals is to create a national scientific observatory on intersex issues. This would be composed of researchers and advocates, intersex and not, with the aim of monitoring the situation in Italy and elsewhere, as well as promoting research and disseminating scientific information.

Global map of intersex groups

Intersex individuals and families do not have enough information and peer support, according to Balocchi. Therefore, she decided to create a global map of intersex organisations.

"This map is the first one of its kind," says Balocchi. "It's a work in progress, so I will continue to update it when necessary, especially because of the vitality with which, in recent years, new organisations are emerging."

The interactive map can be found on the project's website – www.intersexionsproject.eu. It classifies groups on the basis of their membership and aims, and forms part of a strategy to build networks between research centres, intersex organisations and politicians, at both national and international levels.

Multi-disciplinary research

Balocchi's research covered areas as diverse as sociology, biomedicine, anthropology, politics, law, bioethics and human rights. It involved both qualitative and quantitative methods. The qualitative focus included in-depth narrative interviews with intersex people, parents of intersex children, medical and mental health professionals, feminists and LGBTQ activists.

Balocchi notes a huge lack of quantitative data on intersex variations and the numerous medical treatments that intersex people receive, attributing this to concealment or denial of the phenomenon itself. As part of her research, she analysed 20-years' worth of data related to individuals with intersex variations from hospitals in Tuscany. This data was important for producing the new guidelines on intersex issues for Italian policymakers.

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