Driven by her concern for the treatment of intersexed children, College of Arts and Sciences Associate Professor Ellen Feder authored “Making Sex of Intersex: Changing Ethical Perspectives in Biomedicine” to evaluate the process of intersex intervention.
In her book, Feder draws particular attention to the medical treatment of intersexed individuals, or people who are born with atypical sex anatomies. She explores the differences between the corrective operations in the West and in other regions of the world, as the operations often fail to meet safety and ethical standards in certain areas of the globe.
“Criticism of normalizing medical interventions for atypical sex anatomies, or ‘intersex’ bodies, has likened these practices to ritual genital cutting in the global south,” Feder said. “In reexamining this comparison we may find unexpected insight into the motivation for normalizing genital surgeries in the global north, and encounter troubling questions about the place of ethical deliberation in the care of children with atypical sex anatomies.”
Feder’s book focuses on the bioethics behind using medical intervention on intersexed individuals and the significance of the way medical professionals and parents approach the medical treatment of intersexuality.
“The problem should not be understood to lie in children’s bodies, but in attitudes that make atypical anatomies seem like problems to be fixed,” Feder said.
Intersexed children are often viewed by medical professionals and their parents as having a problem that needs to be fixed, though Feder disagrees with their sentiment.
“Parents and doctors want to ‘fix’ children so that that they will feel this belonging and be spared the pain of abnormality,” Feder said. “But what if we see the problem not in the bodies of children, but in the attitudes that make those with atypical sex anatomies not feel normal?”
How parents manage after learning that their children are intersexed is a key aspect of children’s experience with intersexuality.
“Hearing that something is ‘wrong’ with your infant or young child is very difficult for any parent,” Feder said. “I think one of the challenges for parents is trying to distinguish problems that are genuine medical problems and some conditions associated with atypical sex anatomies are serious, even life-threatening conditions, from cosmetic issues of appearance.”
Feder’s book is not her first formal foray into topics relating to atypical genitalia. In 2012, Feder coauthored a paper entitled “Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine.” The article examined how early pregnancy consumption of dexamethasone, a steroid drug, could help develop congenital adrenal hyperplasia (CAH), a malfunction in adrenal glands that results in ambiguous genitalia in female fetuses.
With her extensive work in atypical sex anatomies, Feder concluded that the problem is not necessarily intersexuality itself, but rather with the mishandling of cases involving intersexed children.
“Learning more about ‘the problem’, both as it is understood today and how it has been understood historically, led me to see intersex as a problem of moral responsibility and of a failure–however well intentioned–of physicians’ and parents’ responsibility to the children they care for,” Feder said.“Writing the book was an effort to fulfill what I began to see as my own responsibility to them. It’s a call to do better by children and adults with atypical sex anatomies.”
Feder’s book “Making Sex of Intersex: Changing Ethical Perspectives in Biomedicine” will be released on May 13, 2014.
