Czy można o tym porozmawiać z dzieckiem? Wrodzony przerost nadnerczy a etyka badań z dziećmi i o dzieciach

Abstrakt

In my text, I will discuss the ethical and methodological issues of ethnographic research with children who have a rare genetic disease: congenital adrenal hyperplasia (CAH). It is associated with a deficiency of enzymes involved in cortisol production, which in turn leads to increased production of androgens, potentially resulting in the virilization of genitalia. Individuals with CAH often need lifelong medication, and the absence of such treatment can be fatal. A significant number of girls born with CAH in Poland undergo genital surgery within the first two years of life and again during puberty. However, this practice, sanctioned by medical recommendations, remains subject to criticism from intersex advocacy groups and human rights organizations. This raises questions about the purpose and cultural significance of the surgery, its extent, and the age at which a child can be considered capable of giving informed consent to the procedure.

In this text, I refer to my research on the social aspects of CAH. I consider the ethics of conducting ethnographic research with children on this topic, especially in relation to genital surgeries. How can such research be designed to ensure it is considered safe? Drawing on the tradition of new childhood studies, and referring to the concepts of children’s agency and participation, I explore whether and how it is possible to capture the child's perspective on the surgery. By extending the ethical controversies beyond the research process itself, which is the focus of ethical reflection in social science projects, I propose a reflection on the consequences of obtaining a child's opinion and translating it into the language of academic and non-academic communication.