Community Research and Development Information Service - CORDIS

The sociological aspects of the medicalisation of intersex variations

The more we discover about the variety of congenital differences in human sex characteristics, the more medical treatments are put forward. One EU project researched the sociological impact of medicalisation and identified best practices.
The sociological aspects of the medicalisation of intersex variations
Medical intervention in cases intersex variations, or congenital variations of sex characteristics (CVSC) are frequently painful and irreversible. Since the early ‘90s, the international intersex movement has advocated against unnecessary, non-consensual, elective surgery. They have highlighted the possible side-effects of such interventions which can include: chronic pain; permanent loss of sensation in genital area; sexual dysfunction; sterilisation caused by gonadectomy; incorrect sex/gender assignment; post-traumatic stress and long-term mental health problems.

The research also points to bioethical problems related to prenatal diagnosis and treatment, (such as the use of dexamethasone in foetuses with Congenital Adrenal Hyperplasia - CAH), and termination of pregnancy based on CVSC diagnosis in the absence of exhaustive and competent information for expectant parents.

The EU-supported INTERSEXIONS project considered the apparent paradox that the more we know about variations of sex characteristics, the more the “Western” medical system tries to counteract or “normalise” those differences into an apparent conformity with the sex/gender dichotomy.

“The demand to respect intersex bodily integrity and self-determination is reflected by this research as well as in other recent studies and hundreds of testimonies. In the medical community, nationally and internationally, serious doubts about the current clinical protocols have been expressed, but those who speak out publicly are few,” explains lead researcher Dr. Michela Balocchi, a member of the Research Center PoliTeSse based at the Universtiy of Verona.

There is a lack of a well-documented overview showing the frequency of intersex variations. The scarcity or, in many cases, absence of quantitative data, is also due to the concealment and negation of the phenomenon itself. “Finding quantitative data” explains Dr. Balocchi, “is not only an instrument for epidemiological and sociodemographic analysis, but it is a goal per se.”

In a bid to get a clear idea of where intersex organisations are most active, Dr. Balocchi, with the help of some intersex scholars and allies, has mapped 148 organisations worldwide, creating the first global map of intersex organisations. These are classified on the basis of their membership/composition, cultural starting points, and aims. The map is work in progress. Dr. Balocchi intends to keep it updated.

The map is prevalently focused on organisations that operate in the human rights framework. In order to offer the widest range of information to people directly involved and their relatives, they included some organisations that usually do not operate in the human rights framework, but that offer information on specific variations and peer support.

The quantitative part of INTERSEXIONS project drew on 20 year’s worth of data collected by hospitals in Tuscany. This refers to a population of 3 682 female-assigned and 3 259 male-assigned individuals. The 6 941 individuals recovered in a hospital for reasons not necessarily related to medical issues connected to their intersex variation. “The ground-breaking next step would be to contact all these individuals and ask them if they would like to participate in a national survey about medicalisation of CVSC and human rights,” says Dr. Balocchi.

The project resulted in new, practicable paths of investigation, such as those involving movements for patients’ rights, disability movements, deaf communities’ rights, women’ rights. It also worked to try and further the deconstruction of hierarchies based on binarism.

Subjects

Life Sciences

Keywords

INTERSEXIONS, differences in sex development, congenital variations of sex characteristics, intersex, medical intervention, non-binary gender, intersex human rights, intersectionalities
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