Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine

Author(s): Ellen K. Feder

LGBTI & Queer Studies | Trans, Intersex, Gender Diverse & Gender Non-Binary | Intersex

Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and their families.

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Publishers Weekly

In a voice both urgent and nuanced, Feder squarely faces the complexities that accompany the care of people with atypical sex anatomies in medical science. Intersex people are those whose biology (including chromosomes and genitals) makes it so that they are neither clearly male nor female. Over the past 20 years, the standard of care for intersex people (particularly newborns) has been met with increased scrutiny and criticism from researchers and activists, with the long-standing preference for immediate and unquestioned surgery growing more obviously dubious. Feder is an astute and progressive philosopher, and her bioethical focus takes into account the care and education of intersex people as well as their families, doctors, and communities. She builds this transformative approach through a blend of field research, medical history, and modern philosophy—an array of disciplines that she manages to make stimulating rather than daunting. While activists or medical professionals might disagree with some of her claims, Feder’s attention to the “moral challenges we face as embodied subjects in a damaged world, including those challenges posed by our efforts to deny our vulnerability,” is powerful. Rich with cross-discipline potential, Feder’s engaging argument should provide a new approach for doctors and parents caring for children with atypical sex anatomy. (May)

 

Arlene Baratz

"Feder’s exploration of the ethics of intersex treatment is a cautionary tale for health care providers and families. Her analysis highlights serious deficiencies in the contemporary process of informed consent. As a physician, mother of adults with atypical sex, and moderator of a family support group, I strongly urge clinicians involved in the care of these children to read this book. Feder makes it clear that the prevailing model of decision-making for irreversible treatments such as surgery and hormonal therapy relies on the flawed premise that these treatments will prevent harm to children and families despite evidence that they actually cause harm. Assuming that information overload will paralyze anxious families, physicians fail to provide balanced education on long-term effects. In dismissing input from the ultimate experts, patients with lived experience of lasting physical and emotional trauma, clinicians neglect their primary moral obligation to vulnerable families. By the time parents learn of their child’s right to sexual integrity, physical change is irrevocable. It is too late to restore the original "outer self" integral to the core sense of being whole that lets a child engage with the world, love and be loved." —Arlene Baratz, Medical Advisor, AIS-DSD Support Group

Alice Dreger

"InMaking Sense of Intersex,Ellen K. Feder expertly employs the tools of the medical humanities to examine the thoughts, desires, and growth potential of the parents and clinicians who care for childrenborn intersex—with sex chromosomes, hormones, or body parts that don't quite match medical standards for males or females. Rather than the usual and often misguided emphasis on gender identity development and its attendant politics, Feder focuses instead on how parents love and how clinicians care. The result is a powerfully sympathetic and deeply moving call to a better way for all of us." —Alice Dreger, Northwestern University

 

Suzanne Kessler

"Just when you thought nothing more could be added to intersex scholarship, Ellen Feder, a compassionate philosopher, uses the tools of her discipline to expand our understanding. Drawing on chilling stories of the treatment of children with "Disorders of Sexual Differentiation," she tackles questions like: What constitutes good medical care? Why are children’s needs subverted? What underlies the compelling appeal of normality and aversion to intersexuality?" —Suzanne Kessler, Lessons from the Intersexed

 

From the Publisher

"An important book for bioethics as well as theories of gender and sexuality. A gripping narrative with clarity of purpose and ease with major philosophical approaches to ethics and sexuality." —Cynthia Willett, Emory University

"Linking the problems raised by treatment of the intersexed to problems that are endemic to the field of bioethics, Feder argues that, in seeing itself charged with the task of solving specific case problems, bioethics has abandoned its philosophical mission of examining the ways that these case problems are framed and neglected its philosophical obligation to critique the context within which bioethics is asked to operate. A controversial and radical conclusion, yes, but one that is skillfully defended." —Debra Bergoffen, author of Contesting the Politics of Genocidal Rape: Affirming the Dignity of the Vulnerable Body

 

"Rich with cross-discipline potential, Feder’s engaging argument should provide a new approach for doctors and parents caring for children with atypical sex anatomy." —Publishers Weekly (Starred Review)

 

"Feder's book is a welcome injection of new ideas into feminist scholarship on intersex, post-Consensus Statement era." —Women's Review of Books

 

Debra Bergoffen

"Linking the problems raised by treatment of the intersexed to problems that are endemic to the field of bioethics, Feder argues that, in seeing itself charged with the task of solving specific case problems, bioethics has abandoned its philosophical mission of examining the ways that these case problems are framed and neglected its philosophical obligation to critique the context within which bioethics is asked to operate. A controversial and radical conclusion, yes, but one that is skillfully defended." —Debra Bergoffen, author of Contesting the Politics of Genocidal Rape: Affirming the Dignity of the Vulnerable Body

 

Cynthia Willett

"An important book for bioethics as well as theories of gender and sexuality. A gripping narrative with clarity of purpose and ease with major philosophical approaches to ethics and sexuality." —Cynthia Willett, Emory University

 

General Fields

  • : 9780253012289
  • : Indiana Uni Press
  • : Indiana Uni Press
  • : April 2014
  • : books

Special Fields

  • : 278
  • : PAPERBACK
  • : Ellen K. Feder