MANAGEMENT OF INFANTS WITH AMBIGUOUS GENITALIA

The current management of children born with ambiguous genetalia by physicians in consultation with parents at many hospitals around the country calls into view a number of far-reaching ethical implications.

Who has the right to decide whether a child should have irreversible surgery on genitals or gonadal tissue purely for cosmetic appearance at an age before the child is able to give informed consent? Why is it important to have a 'normal' body? What are the long-term impacts of deciding gender for a child before he or she has a chance to assert his or her own identity? What are the longer-term physiological impacts (such as loss of erotic sensation and orgasmic function, scarring, unnecessary vaginal dilation, lifelong hormone replacement therapy, sterility and osteoporosis )?

Do not intersex children have the same rights as other ‘normal’ children, which doctors would never perform such risky surgeries upon? It is perhaps a given that no Western doctor would ever perform or condone female circumcision nowadays, for instance.

It is our experience that surgery does not 'cure' intersex. In fact, surgery during infancy and early childhood can have many unfavourable consequences.

To see an outline of the way we feel children with intersex variations ought to be treated, click here (pdf version). Also check out preferred treatment paradigm for children with intersex variations (pdf format). The AIS Support Group Australia Inc/ supports calls for a moratorium on non-urgent medical intervention. This includes gonadectomies on children with AIS and clitoral recession.

Below are a range of articles on the management of infants with ambiguous genetalia, which include both medical papers and articles published in the popular media.

Poem By Graham...

We have feelings too you know?
Not that the medics care
They couldn't care less about how we feel
As they poke and prod and stare

A decision is made that will shape our lives
They like playing God you see
They think that surgical correction
Will be all that we will see

The decision is made when we have no say
They're doing what's best for the child
If only they knew what pain they cause
That will one day drive us wild

Why don't they leave us all alone?
Until we have a choice
The day when we discover
That we actually have a voice

To be a boy or be a girl
A sister or a brother
A choice that should be made by us
And not by any other

We have a right to be who we are
To be a husband or a wife
Not a surgeon with a knife
Unless a case of life or death

Please try to leave us alone
Until the day when we can make
A decision of our own

 

"Toweling off a sparkling clean baby!" by Lab2112, 2007. Creative Commons license.

Articles

Click on any of the headings to see the full article. You may also wish to peruse our page on legal issues and medical research.

Medical decision-making and the child with a disorder of sex development (DSD)

By Anne Tamar-Mattis, November 07 2008, Endocrine Today

Medical decision-making and the child with a DSD (intersex condition). Perhaps the first question isn't what to decide, but who should decide.

Ethical Principles for the Management of Infants with Disorders of Sex Development.

Gillam LH, Hewitt JK, Warne GL. Children's Bioethics Centre, Royal Children's Hospital, Melbourne, Vic., Australia. Horm Res Paediatr. 2010 Aug 12.

Abstract: The Fifth World Congress on Family Law and Children's Rights (Halifax, August 2009) adopted a resolution endorsing a new set of ethical guidelines for the management of infants and children with disorders of sex development (DSD). The ethical principles developed by our group were the basis for the Halifax Resolution. In this paper, we outline these principles and explain their basis. The principles are intended as the ethical foundation for treatment decisions for DSD, especially decisions about type and timing of genital surgery for infants and young children. These principles were formulated by an analytic review of clinician reasoning in particular cases, in relation to established principles of bioethics, in a process consistent with the Rawlsian concept of reflective equilibrium as the method for building ethical theory. The principles we propose are: (1) minimising physical risk to child; (2) minimising psychosocial risk to child; (3) preserving potential for fertility; (4) preserving or promoting capacity to have satisfying sexual relations; (5) leaving options open for the future, and (6) respecting the parents' wishes and beliefs.

Gender assignment surgery on children with disorders of sex development: A case report and discussion from South Africa

By Rebelo, E., Szabo, C. P., Pitcher, G., Child Health Care 2008 12: p. 49-59

Declared a woman, Bahraini man battles Arab norms

With his wrestler's build and deep voice, it is hard to believe that Hussein Rabei could ever be mistaken for a woman, but in the Middle East cultural norms can blind people to the glaringly obvious.

When a Person Is Neither XX nor XY: A Q&A with Geneticist Eric Vilain

May 30, 2007 in Scientific American

Eric Vilain discusses the biology and politics of mixed-sex individuals, arguing that terms such as "hermaphrodite" and "intersex" are vague and hurtful.

Going beyond X and Y

By Sally Lehrman, May 20, 2007 in Scientific American

Babies born with mixed sex organs often get immediate surgery. New genetic studies, Eric Vilain says, should force a rethinking about sex assignment and gender identity.

Consensus statement on management of intersex disorders

By Lee, P. A. 2006 in Pediatrics. 118 (2): e488-e500.

The birth of an intersex child prompts a long-term management strategy that involves myriad professionals working with the family. There has been progress in diagnosis, surgical techniques, understanding psychosocial issues, and recognizing and accepting the place of patient advocacy. The Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology considered it timely to review the management of intersex disorders from a broad perspective, review data on longer-term outcome, and formulate proposals for future studies. The methodology comprised establishing a number of working groups, the membership of which was drawn from 50 international experts in the field. The groups prepared previous written responses to a defined set of questions resulting from evidence-based review of the literature. At a subsequent gathering of participants, a framework for a consensus document was agreed. This article constitutes its final form.

Dilemmas when gender is uncertain.

By O'Rourke, M. The Weekend Australian. March 19-20, 2005.

When the midwife passed Andrew and Megan O'Brien their new baby, they were thrilled to notice that he was a boy, even though an earlier ultrasound had foretold a girl.

Surgical feminising: The right approach?

By Liao, D. L.-M. and P. M. Boyle 2004. The Psychologist. 17 (8): 459-462

Dr Liao and Professor Boyle look at clinical options for intersex people, making the case that it is more public understanding rather than more 'treatment' that is needed, in order for future generations of intersex people to have real choices in how they want to manage their difference - without societal pressure to have their body surgically sexed, often time and again.

Moving toward an international standard in informed consent: The impact of intersexuality and the Internet on the standard of care

By Martin, P. L. 2002. In Duke Journal of Gender Law and Policy. 10: pp.135-170.

What determines sexual identity? Basic assumptions about human gender, sexual identity and sexual re-assignment, and what makes a person male or female, or man or woman, are being re-evaluated in light of David Reimer's experience and subsequent revelations from intersexed individuals, concomitant with new medical procedures, theories and standards.

Paediatric Surgeons at it again!

Paediatric Surgeons from the Royal Children's Hospital Melbourne have published a paper supporting the practices they are currently involved in reviewing. Is there are conflict of interest? Is their hypothesis sustainable?

New intersex study fuels debate

Tuesday, 17 September 2002 by Anna Salleh - ABC Science Online

A long-term study of intersex adults, who were born with genitalia that made it difficult to know if they were a boy or a girl, has furthered the controversy about current treatment practices.

"First, Do No Harm" - The Fiction of Legal Parental Consent to Genital-Normalizing Surgery on Intersexed Infants.

By Ford & Kishka-Kamari. 2001. Yale Law and Policy Review 19 (469).

Yale Law and Policy Review examines surgical liability.... "Surgeons who perform genetic normalizing surgery, whether on an emergency basis or at the behest of the intersexed infant's parents, should be aware that, because genital-normalizing surgery is not necessary nor proven beneficial for the infant with clitoromegaly or micropenis, the required elements of legal informed consent are likely to have not been met. In light of the questionable scientific basis behind its use, the lack of follow-up data on its benefits, and the overwhelming evidence of its negative physical and psychological results for many intersexuals, a moratorium should be declared on the use of defenseless infants as the experimental subjects of genital-normalizing surgery."

"Hidden Genders"

By Christine Toomey in The Weekend Australian magazine supplement to The Weekend Australian newspaper, 8-9 December, 2001.

Imagine if you'd grown up thinking you were female and discovered at 20 that, genetically, you were a man. Imagine you are a happily married man of 29, whose only problem is that your wife is failing to conceive, and that tests reveal the problem lies with you - your genes are 100 per cent female. Or you discover your parents had been advised by doctors never to tell you there had been doubts about your gender, or that surgeons operated on you and did not tell you the real reason for the surgery. These people were born with a medical condition called intersex, and their stories are not as unusual as you might suppose. The large brown envelope that made sense of Melissa's troubled past arrived in the post shortly after her 18th birthday.

'Micropenis' babies are happier male

Genetically and physically, male babies born with a condition called "micropenis" are more likely to achieve psychological and sexual well-being in adulthood if raised male, according to a new study by researchers at Johns Hopkins and three other centers.

Clitoral Surgery

By Sarah Creighton and Catherine Minto, Department of Gynaecology, University College London Hospitals

Warns that cliotral surgery, such as clitoral recession or excision, should be delayed.

Making the Cut

By Martha Coventry, Ms. Magazine, Oct-Nov 2000.

It's a Girl!..... or is it? When there's doubt why are surgeons calling the shots?

Sex police

By By Sally Lehrman, April 1999.

An article about the debates around infant surgical assignment.

Pediatric Ethics and the Surgical Assignment of Sex

By Kenneth Kipnis, Ph.D. & Milton Diamond, Ph.D., University of Hawai`i that appeared in The Journal of Clinical Ethics, Volume 9 (4):398-410 Winter 1998.

It has been standard pediatric practice to recommend surgery for infants with ambiguous genitalia or loss of the penis. The parents of these patients are told to raise them without ambiguity and, in consequence, many adults who have had these operations in infancy have never been candidly informed of their medical histories. This management approach, which can involve a reassignment of sex, has its basis in research done on hermaphrodites and a single set of identical twins originally tracked more than two decades ago. The current article reviews this practice and its epistemic foundations. It is argued that there should be a moratorium on such surgery; that the medical profession should complete comprehensive lookback studies to assess the outcomes of past interventions; and that efforts should be made to undo the effects of past deception.

Management of Intersexuality: Guidelines for dealing with individuals with ambiguous genitalia

By Milton Diamond, Ph.D. & H. Keith Sigmundson, M.D. in Pediatric & Adolescent Medicine, 1997

The authors suggest guidelines for surgeons and treating specialists to follow "based on our experiences, the input of some trusted colleagues, the comments of intersexed persons of various etiologies and the best interpretation of our reading of the literature."

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