Case Study: Culture Clash Involving Intersex

Intersex Management in the United States and Non-Western Cultures

“…The case study also explains that the culture favors males, the parents would have a difficult time accepting their child as a female, and that the child might be at risk for physical harm or murder if he became homosexual. This case presents an ethical dilemma; the surgeon did not feel comfortable operating without the child's consent, while the family maintained that the father should make this important decision without disclosure to the patient (Diamond et al, 2003).…”

“…Though he was originally brought to the hospital for hypospadias, bleeding through the penis, and abnormal breast development, it was soon discovered that the boy was genetically XX and had a uterus and ovaries. He was diagnosed with congenital adrenal hyperplasia and required hysterectomy and oophorectomy (removal of the ovaries) in order to prevent bleeding through the penis (representing menstruation) (Diamond, Systma, Dreger, & Wison, 2003).…”

“…Diamond notes that a "family-centered model" supports the father's right to make a decision, as it gives the smooth functioning of the family unit the biggest priority (versus the independence of its individual members). For instance, if the child's reassignment to female would make it impossible for the family to return home due to societal prejudice, this reality should be a factor in decision-making (Diamond et al, 2003).…”

“…They assert that intersex children have a right to be informed and make important decisions about their bodies, regardless of culture. In other words, children's genitals are not "an acceptable locale for cultural relativism" (Diamond et al, 2003).…”

Do as I Say, Not as I Do: Why Bioethicists Should Seek Informed Consent for Some Case Studies

“…Editors should carefully assess claims that the case is not sufficiently unique or detailed to require consent, given the conflict of interest between protecting the subject and being published. Additionally, no disclaimers or disclosures are published with the cases to indicate that they may have been anonymized or that consent was obtained 37 . The former would at least indicate to readers, especially lay readers, that if they believed that they recognized a case, they should not assume that all the details are true.…”