The Sterilisation of Girls and Young Women in Australia
A legal, medical and social context by Susan M Brady and Dr Sonia Grover
A report commissioned by the Federal Disability Discrimination Commissioner for the
Human Rights and Equal Opportunity Commission, December 1997
This work is copyright. Reproduction in any format is permitted on condition that the
source and authors are acknowledged.
Contents
Foreword
Authors
Acknowledgements
Terms Used
1. Introduction
General
A Sorrowful History
Debate And Publicity
Sterilisation - Social And Personal Context
Annie
2. The Legal Context of Sterilisation of Children
The Common Law
State Legislation
Commentary
(i) The best interests of the child, as a last resort
(ii) The therapeutic/non-therapeutic distinction
Summary
3. Medical Approaches to Sterilisation of Children, and Appropriate Alternatives
What is Sterilisation?
A) Hysterectomy
B) Endometrial Ablation
C) Bi-lateral Oophorectomy
D) Tubal Ligation
Girls and medical issues relating to gynaecological health
A) Diseases of the reproductive tract
B) Menstrual disorders
Girls with Intellectual Disability and Menstruation
(i)
Reasons that are commonly given in support of the sterilisation of girls with
intellectual disability by way of hysterectomy and endometrial ablation
(ii) Alternative and less invasive ways of addressing these issues
(iii) responses to the reasons commonly given in support of sterilisation of girls with
intellectual disability by way of hysterectomy and endometrial ablation
Summary
4. The numbers of sterilisations of children which have been authorised by courts
and tribunals
The Court And Tribunal Data
(i) in South Australia:
(ii) in New South Wales:
(iii) in the Family Court Of Australia:
Summary
5. The numbers of sterilisations of children being performed in Australian hospitals
The Health Insurance Commission (HIC) data
The Australian Institute of Health and Welfare (AIHW) Data
A Comparison between the HIC and AIHW data
Commentary
Summary
6. Summary
Appendix 1
Appendix 2
Appendix 3
Selected Bibliography
Foreword
Over a long period the Human Rights and Equal Opportunity Commission has sought to
ensure that people with an intellectual disability are not subjected inappropriately to
sterilising surgical procedures.
In 1992, in a case known as Marion’s case, the High Court held that court or tribunal
authority is required before any child can lawfully be sterilised, unless the sterilisation
occurs as a by-product of surgery carried out to treat some malfunction or disease; and
that authorisation may be given only if sterilisation is determined to be in the child’s best
interests after alternative and less invasive procedures have all failed or it is certain that
no other procedure or treatment will work.
I commissioned this report in response to concerns that the principles laid down by the
High Court were not being complied with. It is a report not by the Human Rights and
Equal Opportunity Commission itself but by two independent experts. I find the evidence
presented here deeply disturbing. I believe it should be deeply disturbing to all members
of the Australian community.
The report presents evidence which indicates that sterilisations of girls since Marion’s
case have far exceeded those authorised by courts and tribunals. To quote from the
Summary of this report:
Courts and tribunals have authorised a total of 17 sterilisations of girls since Marion’s
Case. Meanwhile, data collated by the Health Insurance Commission shows that at least
1045 girls have been sterilised over this same period, and this figure counts only those
sterilisations which qualify for a medicare benefit and for which a claim has been
processed. It excludes sterilisations carried out by hospital doctors on public patients in
public hospitals. Comparisons with other data sources suggest that the true number is
much greater, perhaps by a factor of several times.
The report concludes that “without any doubt” most of these operations have been
unlawful; and that therefore “the law has failed to protect significant numbers of children
from significant abuse of their fundamental human right to bodily integrity. Worse, the
community has aided and abetted that abuse by funding it”.
I release this report in my last weeks of office as Disability Discrimination
Commissioner. I call on all government and medical authorities with relevant
responsibilities, and on the Australian public, to ensure that the evidence presented in this
report is acted on.
Elizabeth Hastings
Federal Disability Discrimination Commissioner
November 1997
Authors
The views expressed in this paper are based on direct case work experience since 1989 in
more than 30 sterilisation matters in Victorian adult guardianship jurisdiction and the
Family Court medical powers jurisdiction in my former capacity as Senior Advocate of
Victoria’s Office of the Public Advocate and in special medical procedures project work
for the Queensland Department of Families, Youth and Community Care. In these
capacities I have had the opportunity of meeting many families seeking the sterilisation
of daughters with disabilities as an option for fertility and menstrual management.
Further work in this area has been undertaken as part of my PhD program at the
University of Queensland. The opinions expressed are mine and do not represent the
views of these agencies.
Susan M Brady
Since 1989 I have held the appointment of consultant gynaecologist to the Royal
Children’s Hospital and the Centre for Adolescent Health, Parkville, Melbourne. In this
position I have been involved in the gynaecological care of a significant number of young
women with intellectual disabilities. I have acted as representative and spokesperson for
the Royal Australian College of Obstetrician and Gynaecologists on the topic of
menstrual management and sterilisation of women with an intellectual disability.
Dr Sonia Grover, MBBS, MD, FRACOG
Acknowledgements
The authors would like to thank the families, specialist service providers, medical
practitioners, disability advocates and lawyers who have provided differing positions
with varying viewpoints, and a wealth of knowledge about the sterilisation of children in
Australia.
In particular special thanks go to John Briton for his significant contribution to the
content, design and analysis of material in this paper. We would also like to thank Kate
Showell for her data, graphic and administrative skills, and patience.
Terms used
This paper addresses the sterilisation of girls and young women up to 18 years of age.
We will use the term “girls” rather than the longer and more unwieldy term “girls and
young women”. We are conscious of the potential criticisms that by so doing we are
using language which trivialises the capacity and right of young women who are yet to
reach 18 to have expressed and considered views about their own gynaecological well
being. We mean no such disrespect. We use the term “girls” simply by way of
abbreviation. We specifically do not use the term “young women” for this purpose
because it distracts attention from the reality that significant numbers of sterilisation
procedures are carried out on children who are neither teenagers nor menstruating.
By “sterilisation” we mean a surgical intervention which results either directly or
indirectly in the termination of an individual’s capacity to reproduce. Typically we refer
to “sterilisation procedures”, by which we mean those medical interventions which are
known to or are reasonably likely in all circumstances to cause sterilisation whether or
not that is the purpose for which they are carried out.
Some sterilisation procedures (for example hysterectomy but not tubal ligation) eliminate
menstruation but the most commonly used menstrual suppressants (for example depo
provera) are not sterilisations because they do not permanently terminate the capacity to
reproduce but only temporarily prevent it. The widespread and inappropriate use of
menstrual suppressants with girls with disability is a related but separate issue to that of
sterilisation, and not one that we address in this paper.1
1
For a comprehensive discussion of that issue, see Melita et al (1992) Report to the Minister for
Community Services, Victoria on Menstrual Suppressants. That report describes the widespread, indeed in
some instances blanket administration of drugs causing menstrual suppression to girls and women with
intellectual disability in Victorian institutions, whether or not it was required for contraceptive purposes
and without routine gynaecological screening. It was administered for the convenience of staff. Reforms
have occurred.
1. Introduction
General
This report concentrates on the sterilisation of girls and young women. Sterilisation
procedures are performed on girls with intellectual disabilities and all cases that have
come to the attention of relevant authorities (including the Family Court of Australia,
state Supreme Courts, and state Guardianship Tribunals) have involved the sterilisation of
girls with intellectual disabilities. This is not to say that boys with intellectual disabilities
are not subject to sterilisation procedures.
The report poses a range of unanswered and grave questions about the fundamental
breach of human rights and well-being of children subject to unauthorised sterilisation
procedures. It suggests that a genuine concern for protection of the child’s best interests
should be about a broader advocacy of the child’s interests not simply the narrow legal
questions of who should make the decisions and how they should be made.
The report suggests that fundamental to the success of protecting and ensuring best
interests is the support and cooperation of a broader community of medical practitioners,
human service providers, specialist consultants in disability, advocates and others. Any
weak link will compromise positive outcomes for the child.
A Sorrowful History
In 1997 Time Magazine2 ran a story on an “exceptionally disquieting, macabre Swedish
scandal” which has shocked and shamed the Swedish community.
The scandal came to light in reports by the newspaper Dagens Nyheter which detailed the
case of an institutionalised child who was sterilised without her consent and her
subsequent writ against the state for compensation. The Swedish government rejected
responsibility replying only that “sterilisations had been lawful at the time”.
What happened in special schools and institutions after the Second World War and as late
as the mid-1970’s to children with disabilities was, according to the Swedish Minister for
Social Affairs, “nothing short of barbaric”. At the height of the eugenics3
campaign two thirds of the girls were sterilised. The Swedish government is now
looking at a review of legislation to ensure protection of children and compensation for
victims of past sterilisation abuses.
Today eugenics ideology is largely rejected but it is not extinct. Mythologies about the
2
Walsh , James., (1997) Unnatural selection, Time Magazine, 22 September. Pp90-92
3
The term eugenics is derived from a Greek word meaning “well born”.
characteristics and nature of people with intellectual disabilities continue. The residue of
this type of thinking continues to have the potential for profound and alarming
consequences for girls and women with intellectual disabilities in Australia.
In Australia sterilisation procedures on children with intellectual disabilities are
rationalised on the basis that the operation is in the child’s best interests. She “…would
not have to be informed about menstruation. She would not have to experience the
discomfort and inconvenience of monthly periods. There would be no danger of
pregnancy with all its attendant pain and trauma; no need for abortions; no wasting time
and energy on sex education”4.
It is fair to say that these views are not embraced by the disability community.
Debate and Publicity
There has been a lot of publicity in Australia for many decades about the sterilisation of
people with disabilities. For example the Medical Journal of Australia in 1931
“supported the sterilisation of mental defectives and patients with a mental disease as a
condition of discharge from hospital. It concluded that a mental defect is often inherited,
mental defectives are prolific and sterilisation is a safe and simple procedure”.5
Medical opinion about the hereditary nature of intellectual disability has changed. The
decrease in the number of sterilisations on the basis of eugenics has not been caused by
court decisions but rather changes in attitude by the medical profession.6
Justice La Forest in Re Eve (1986)7, a celebrated case, emphasised that due caution was
required regarding decisions in favour of sterilisation. He said “…the decision involves
values in an area where our social history clouds our vision and encourages many to
perceive the mentally handicapped as somewhat less than human.”
Irrespective of changes in professional and community attitudes the debate has continued
at medical and parliamentary levels, in the popular media television and radio, in
newspapers8, in community organisations, and at public meetings about the sterilisation
of people with intellectual disabilities. It is also well represented in academic articles
from a broad range of professional view points.
The disability and human rights community however remain gravely concerned and
sceptical and want to ensure adequate protection from sterilisation abuses for children
and adults with disability in Australia.
Goldhar,J.,(1991) The Sterilisation of Women with an Intellectual Disability”, University of Tasmania
Law Review, 10, p174.
5
ibid,p 170
6
Ferster, EZ.,(1966) Eliminating the Unfit - Is Sterilisation the Answer? Ohio State Law Journal 10, p.599
7
Re: Eve (1986) 31 DLR (4th) 1. 32.
8
See appendix 1 for the most recent national press reportage of the sterilisation debate.
4
Sterilisation - Social and Personal Context
Proposition to be considered: A child’s best interests can be met by seeing the issue of
sterilisation in context, and not as a legal or medical problem.
To see the issue in context it is necessary to look at family realities and the demands of
every day life with a child with a disability. Positive outcomes for the child and her
family are essentially about accessing appropriate advice, supports, and services from a
range of experts in developmental disability.9 They can provide a briefing on
developmental and social factors outside the field of medical expertise and an
interpretative framework for consideration of the special needs of the child and supports
required by her family. In so consulting there is an acknowledgment that these matters
require a coordination of efforts between a range of medical, allied health, and
developmental services.
Work and research with families indicates that most families do not want to subject their
daughter to invasive surgery.10 Experience has demonstrated that it is important to
recognise and acknowledge the individual nature of each family’s experiences of
adjustment to the birth of a child with a disability. It is a situation wholly beyond there
control and most are completely unprepared for it. Parents have variously described the
experience as one of powerlessness, helplessness, vulnerability, anger, despair and grief.
It is the parental adjustment and their unique experiences of this which impacts upon
accommodating daily life and in turn moulds the lives of their children, their parenting
practices and attitudes.11 These families are often in situations of economic hardship, it is
likely they will be a single income household, one parent remaining at home to care for
the child with the disability, or being restricted to part time employment. It is important
to recognise their past experiences with medical and human service practitioners.12 This
impacts upon the way in which they frame the need for sterilisation and their attitudes
towards medical and other service providers and the services they offer.
As a child reaches puberty old fears and vulnerability’s re-emerge, parents again mourn
the loss of the child’s potential and seeking sterilisation of their daughter often see it as
the only option.
The above comments will be put in context by Annie’s Story13 and provide an illustration
9
Taylor,M., Carlson, G., & Wilson,J., (1995) Managing Menstruation. (3rd ed) Brisbane. Queensland
Department of Families Youth and Community Care.
10
Brady,SM, (1995) The Rights of the Child to Be Heard -Potential Hearing Impairments in the Legal
Process , Proceedings 29th Australian Legal Convention, Australian Law Council, Brisbane pp. 101-117
11
Berry,L & Zimmerman,W (1983) The Stage Model Revisited, Rehabilitation Literature (44),pp 275-277;
Scieffert,A (1978) Parent Initial Reactions to having a mentally retarded Child:A Concept & Model for
Social Workers, Clinical Social Work Journal(6), pp33-43.
12
Beange,H.,(1996) Caring for a Vulnerable Population, Medical Journal of Australia, 164, pp 159-160 ;
Beange,H.,(1986) The Medical Model revisited, Australian and New Zealand Journal of Developmental
Disabilities, 12, pp3-7; Beange,H.,(1993) Report on a Survey of Medical Disorders in Intellectually
Disabled Adults, Sydney:Commonwealth Department of Community Services and Health.
13
See Brady 1995 for a full extract of the case and a discussion.
as to why it is important not to see a request for sterilisation as limited to a medical or
legal problem.
Annie
Annie is eleven years old and has a severe intellectual and physical disability as a result
of a near drowning when she was two years old. She was admitted to hospital where she
remained until transferred to a Children’s Home six months later. She remained at the
Children’s Home until late 1994 when it closed. At age eleven she was returned home to
the care of her parents. This was difficult for both parents and her siblings since she
required full nursing care. Over the years she had undergone numerous surgical
procedures and after each one “she had regressed” taking a long time to relate to her
family or carers. This was a matter of great concern particularly when the outcomes of
surgery were less than her parents had hoped.
Prior to returning home she had surgery for the implantation of a “button” in her stomach
wall which allows for intravenous feeding. It was a procedure required to assist her
parents care for her at home. It made nursing management easier because less one to one
contact time is required to maintain adequate nutrition. It also means she does not have
the previous personal contact at meal times. She likes human contact and tends to
become disruptive when she does not have it.
Her father described an incident when he and his wife had been asked to attend hospital
to participate in a case conference with a number of physicians who were considering an
orthopaedic procedure to release her legs form their contracted and stiff position. The
result would make transporting and caring for her easier. He said the surgeons had asked
him to show them the range of flexibility in her legs. He initially declined saying he was
really not familiar with her condition as he was not her primary carer. He accidentally
broke both legs. He was distraught and said his daughter was terrified of him and that it
took almost a year before she would make eye contact with him. The operation
proceeded and after months in plaster casts, traction and skin ulcers limb flexibility had
not increased as her parents had hoped.
The next recommended surgery for Annie was a hysterectomy. Her parents viewed
surgical intervention cautiously but felt that if doctors were proposing the hysterectomy
then it ought be in her best interests. The procedure was to assist with her care and
nursing management. She was not menstruating but it was thought that she would do so
within the next couple of years.
Her parents sought a hysterectomy on the grounds that she would not be able to assist
with her menstruation. They were also worried that she was vulnerable to sexual abuse
and its potential consequence pregnancy would be detrimental to her wellbeing. It was
accepted that she would always require full nursing care and supervision and that she
would be unable to care for a child. It was suggested that contraceptive medications may
interfere with control of her epilepsy.
Question to be considered: Is this case about a medical problem or a legal problem, or is
it best seen and addressed as a problem about a paucity of support services for her family
and their fears for her future? (See Chapter 3 for a discussion of these issues.)
2. The Legal Context of Sterilisation of Children
The evolution of and current legal framework surrounding the sterilisation of children is
described in detail in a number of authoritative reports - in particular in its Report on
Consent to Sterilisation of Minors by the Law Reform Commission of Western
Australia14; and in the Family Law Council’s Report to the Attorney General Sterilisation
and Other Medical Procedures On Children15. For present purposes it’s sufficient to give
a summary only.
The Common Law
The issue was extensively considered by the High Court in Marion’s Case in 1991.16
It has been well established in law for many years that, (emergencies aside), medical
treatment in the absence of valid and effective consent is civil and criminal assault, and
that as a general rule, parents can give valid and effective consent on behalf of their
children.
What wasn’t known however was whether parental authority to consent to medical
treatment on their children’s behalf extended to sterilisation procedures. The uncertainty
was illustrated only too clearly by four reported decisions of single judges of the Family
Court during 1988 and 1989. Two concluded that parental authority extended to
consenting to sterilisation17, and two came to exactly the opposite conclusion, deciding
that court authorisation was required18. In Marion’s Case the High Court held by majority
that:



14
children who have the maturity and intelligence to fully understand what is proposed
can give effective and valid consent to medical treatment even though they may not
have reached the age of legal adulthood19;
as a general rule parents and guardians have lawful authority to consent to medical
treatment on behalf of their children who are insufficiently mature to give (or
withhold) it on their own behalf, provided that the treatment is in the child’s best
interests20;
parental authority to consent to sterilisation procedures is limited to circumstances in
which sterilisation occurs “as a by product of surgery appropriately carried out to
The Law Reform Commission of Western Australia (1994) Report on Consent to the Sterilisation Of
Minors.
15
Family Law Council (1994) Sterilisation and Other Medical Procedures on Children, Report to the
Attorney-General, Canberra.
16
Secretary, Dept of Community Services and Health v JWB and SMB, 1992 CLR 218
17
Re a Teenager, 1988 13 FamLR 85; and In Re S, 1989 13 FamLR 660.
18
Re Jane, 1988 12 FamLR 662; and Re Elisabeth, 1989 13 FamLR 47.
19
Gillick v West Norfolk and Wisbech Area Health Authority, [1986] AC 112, adopted in Marion at Pp
236-237.
20
Marion, at PP 239-240.







21
treat some malfunction or disease”21;
only a court has authority to consent to sterilisation procedures carried out for other,
non-therapeutic purposes22;
sterilisation procedures should never be authorised unless “some compelling
justification is identified and demonstrated”23;
just as it is for parents, the issue for the court in considering whether to consent to a
sterilisation procedure is whether in all the circumstances of the particular child the
procedure is in the child’s best interests24;
taking the child’s best interests as paramount necessarily means excluding the
interests of others except to the extent that they have a bearing on the best interests of
the child25 (though the majority commented that “in the circumstances with which
we are concerned, the best interests of the child will ordinarily coincide with the
wishes of the parents26);
to come to the view that a sterilisation procedure is in a child’s best interests the court
has to be satisfied that sterilisation is “the last resort”, or in other words that
“alternative and less invasive procedures have all failed or it is certain that no other
procedure or treatment will work”27;
court authorisation is required because non-therapeutic sterilisation requires
“invasive, irreversible and major surgery” where:
 there is a significant risk of making a wrong decision about both the child’s
present or future capacity to consent and best interests28 (taking into account the
complexity of the question of consent, the role played by doctors in what is not
just a medical decision, and the possibly conflicting interests of the child, the
parents, other family members, and carers), and the consequences of making a
wrong decision are particularly grave29 taking into account the “fundamental right
to personal inviolability existing in the law”30, the “invasion of the right to
personal integrity” represented by sterilisation31, and the resulting inability to
have children32; in circumstances where, “the decision to sterilise … is not
merely a medical issue. The requirement of a court authorisation ensures a
hearing from those experienced in different ways in the care of those with
intellectual disability and from those with experience of the long term social and
psychological effects of sterilisation.”33
the Family Law Act confers a welfare jurisdiction on the Family Court of Australia in
respect of the children of a marriage, and the jurisdiction extends to the authorisation
Marion, at P 250.
Marion, at P 250.
23
Marion, at P 268.
24
Marion, at P 259.
25
Marion, at P 270-272.
26
Marion, at P 260.
27
Marion, at P 259-260.
28
Marion, at P 250.
29
Marion, at P 250.
30
Marion, at P 253.
31
Marion, at P 266.
32
Marion, at P 250-252.
33
Marion, at P 259.
22
of medical procedures including sterilisation.34
State Legislation
Two states have enacted legislation regulating the sterilisation of children, both prior to
Marion’s case and both prohibiting sterilisation (emergencies aside) without court
approval in accordance with set, though very different criteria.

The South Australian Mental Health Act 1977 (the relevant sections of which are now
incorporated in the Guardianship and Administration Act 1993) requires that the
Guardianship Board gives consent before any “prescribed medical treatments”
including sterilisation are carried out on persons who by reason of mental incapacity
are themselves incapable of giving effective consent. This includes children, and
adults with cognitive disability. Failure to comply is an offence, the only exception
being where there are imminent risks to life or health. The offence is punishable by
two years imprisonment or $8,000.00 fine.
The Board can give its consent only if it is satisfied that:

it is “therapeutically necessary”;

there is no alternative method of contraception “that could in all the circumstances be
expected to be successfully applied”; and

cessation of the menstrual cycle is in the child’s best interests and is “the only
reasonably practicable way of dealing with the social, sanitary or other problems
associated with menstruation”.

The New South Wales Children (Care and Protection) Act 1987 requires that the
Supreme Court gives consent before any “special medical treatments” are carried out
on children under 16 years of age, including any procedures “intended to or
reasonably likely to cause permanent infertility”, unless the treatment is necessary as
a matter of urgency to save the child’s life or prevent serious damage to her health.
Failure to comply is an offence punishable by seven years imprisonment.
The Court can give its consent only if it is satisfied that the procedure is necessary to save
the child’s life or prevent serious damage to her health.

34
The New South Wales Guardianship Act 1987 applies to children who are over 16
years of age but not yet 18. It brings to bear the same framework as applies to
children who are under 16 except that it vests jurisdiction not in the Supreme Court
but the Guardianship Board and allows that 16 and 17 year olds may themselves
consent to their sterilisation if they are capable of giving valid consent.
Marion, at P 261.
All three pieces of legislation are inconsistent with the common law subsequently
established by Marion’s Case. They each require court (or tribunal) authorisation before
any sterilisation procedure is carried out on a child, therapeutic or otherwise, and each
oblige the court (or tribunal) to test applications against criteria which are different from,
and in the NSW case very much more restrictive than the best interests test set down in
Marion.
The High Court considered these matters in PvP.35 It decided that:

states can create additional, concurrent jurisdiction to authorise sterilisation of
children, but cannot alter the grounds on which the Family Court exercises the
welfare jurisdiction conferred on it by the Family Law Act; and

any state legislation which narrows the circumstances in which sterilisation
procedures may be authorised by prescribing more restrictive criteria than those
established by Marion is invalid.36
It follows of necessity that any legislative reform to the framework regulating the
sterilisation of children must in the first instance at least come from the Commonwealth
in the form of amendments to the Family Law Act.37
Commentary
In coming to its decision the majority of the High Court in Marion recognised it brought
with it a need for law reform:
“[We] acknowledge that it is too costly for most parents to fund court proceedings, that
delay is likely to cause painful inconvenience and that the strictly adversarial process of
the court is very often unsuitable for arriving at this kind of decision. These are clear
indications of the need for legislative reform, since a more appropriate process for
decision making can only be introduced that way.”38
That is one issue which arises, and it is one of great practical significance. The reforms if
they are to be made must be made in the first instance at least by the Commonwealth.
Marion’s Case has focussed attention not only on those issues but the broader questions
of whether and in what circumstances sterilisation of children should be ever be
permissible, and if so, who should decide, and against what criteria.
35
PvP, 1994 120 ALR 545.
This description does not take account of the complexities relating to ex-nuptial children. For more
detailed description, refer to the discussion in Family Law Council, 1994 at pp 29-32 and The Law Reform
Commission of Western Australia, 1994 at pp. 53-55.
37
Ibid, but especially The Law Reform Commission of Western Australia at pp 117-8.
38
Marion, at P 253.
36
The Family Law Council and the Law Reform Commission have each considered these
questions at length. Both reviewed the literature, and sought and received submissions
from professional bodies, community groups and interested individuals. Their Reports
provide an important commentary on the adequacy of the legal framework which Marion
has established.
What is clear is that there is overwhelming endorsement of the view that there should be
heightened accountability in decision making about the sterilisation of children, that it
requires an independent decision maker in the form of a court or tribunal (though there is
no agreement about which court or tribunal(s) should have the jurisdiction), and that it
must be confined to exceptional circumstances as the option of last resort.
What is equally clear is that the framework established in Marion is widely regarded as
inadequate to achieve that heightened accountability. While they differ in the details, the
Reports of the Family Law Council and the Law Reform Commission of Western
Australia both:

reject the therapeutic / non-therapeutic distinction as insufficiently clear and precise
to mark out a sub-category of sterilisations which can safely escape the heightened
accountability of authorisation by a court or tribunal. Both recommend to their
respective Attorneys General that there be legislation which requires (emergencies
aside) that all proposed sterilisations of children for whatever purposes have this
degree of accountability;

accept the principle that the best interests of the child are paramount, but argue that it
is open to widely divergent interpretation and that clear and precise criteria should be
set out in legislation to guide courts and tribunals in its application. Both recommend
that the legislation makes a presumption that sterilisation is not in a child’s best
interests, makes it rebuttable only if specific criteria are satisfied, and even then gives
the court or tribunal power to proceed only if it is satisfied also that the sterilisation is
a last resort and that there is no realistic alternative.
Their reasoning is instructive.
(i)
The best interests of the child, as a last resort
The best interests principle is fundamental. Whether it be by court or parental authority,
the sterilisation of a child is unlawful unless it is in her best interests, and only as a last
resort.
Brennan J in his dissenting judgement in Marion drew attention to just how broad the
decision-maker’s discretion is in coming to the view that sterilisation is (or is not) in a
child’s best interests:
“the best interests approach does no more than identify the person whose interests are in
question: it does not assist in identifying the factors which are relevant to the interests of
the child … It must be remembered that, in the absence of legal rules or a hierarchy of
values, the best interests approach depends upon the value system of the decision maker.
Absent any rule or guideline, that approach simply creates an un-examinable discretion in
the repository of the power.”39
He returned to the theme in PvP:
“It would be questionable legal policy to assert a power governed by such a wide
discretion to authorise the invasive and irreversible procedure of sterilisation. True it is
that the exercise of many novel discretionary powers come to be guided by precepts
derived from experience in their exercise, but the diversity of values and circumstances
which affect decisions to make sterilisation orders precludes any realistic expectation that
decisions would not be made according to the idiosyncratic opinion of individual
judges.”40
The Human Rights and Equal Opportunity Commission made the point this way in its
submission to the Family Law Council:
“Almost two years have passed since [Marion’s Case] and there are no conclusive or
uniform guidelines as to the discretion … other than by single judges of the Family Court
… Generally judicial failure to provide guidelines has been regretted given the serious
need … Guidelines would better enable parents, guardians, carers and their advisers to
accurately determine whether authorisation would be given by a court without having to
go through the litigious process … Establishing guidelines and procedural safeguards
would ensure that the decision to sterilise is principled and therefore effectively
reviewable.”41
The problem is real. There will be no disagreement that an indisputably therapeutic
sterilisation is in a child’s best interests, but beyond that the principle is only too capable
of widely divergent interpretation. The circumstances vary very considerably from case
to case, making comparison difficult, and decision making is often heavily reliant on
highly subjective judgement and speculative prediction about what the future holds.
But most importantly, neither courts nor parents are well equipped with the relevant
experience, information or perspective to critically test the assumptions and even
mythologies which underlie commonly accepted arguments that sterilisation is in a
child’s best interests.
La Forrest J in the Canadian case Re Eve made the point that:
“judges are generally ill informed about many of the factors relevant to a wise decision in
this area. They generally know little of mental illness (sic), of techniques of contraception
or their efficacy … However well presented a case may be, it can only partially
39
Marion, at Pp 270-271
PvP, at P 569
41
Quoted by the Family Law Council at P 14
40
inform.”42
Furthermore, as was noted in Marion, the question is ‘not merely a medical issue’ but
has to a large degree ‘been medicalised’ nonetheless. The High Court wanted to ensure
that courts hearing these matters have input from people with different professional
backgrounds and experience. It acknowledged the central role of the medical profession
but added that “as with all professions, there are those who act with impropriety as well
as those who act bona fide but within a limited frame of reference”.43
Despite that caution, detailed analysis of the sterilisation cases which have come before
the Australian courts (as well as those in other jurisdictions) shows both that judges
prefer and very often uncritically accept medical evidence to the exclusion of other
relevant expertise and that the medical evidence demonstrated inadequate understanding
of current multi-disciplinary best practice in services to people with disability.44
On this analysis, the courts have failed in the application of the best interests test because
special educators, psychologists, therapists and others have a central role to play in any
decision that a sterilisation is in a child’s best interests, and in particular whether
‘alternative and less invasive procedures have all failed or that it is certain that no other
procedure or treatment will work.’
The same research demonstrates that parents find it difficult to access comprehensive
information about menstrual and fertility management and are often not aware of either
the alternatives to sterilisation or its implications including the possibility of unknown
long term effects. Nor are other support services readily available, whether they be skills
development programs, respite care and recreational options, home help, aids and
appliances, or counselling.
For these reasons, and having reviewed the range of circumstances not uncommonly held
to justify sterilisation of children, the Family Law Council and the Law Reform
Commission of Western Australia both conclude that heightened accountability requires
that there be a legislative presumption that sterilisation is not in a child’s best interests,
and further that decision makers be under an obligation to satisfy themselves of specific
criteria before coming to a contrary view in any particular case.
They both conclude that there are some circumstances which should never justify
sterilisation, with or without the heightened accountability of court authorisation. These
include sterilisation of children:


42
for eugenic reasons,
purely for contraceptive purposes, or
Re Eve, 1986 31 DLR (4th) 1
Marion, at P 262
44
Carlson,G, Taylor,M., Wilson,J., and Griffen,J.,(1994) Menstrual Management and Fertility
Management for Women who have Intellectual Disability and High Support Needs : Analysis of Australian
Policy (2nd ed) Department of Social Work and Social Policy , University of Queensland.
43

as a means of avoiding or masking the consequences of sexual abuse.45
The Family Law Council adds a fourth circumstance:

sterilisation prior to the onset of menstruation based on predictions about future
problems that might be encountered.
Both consider that there are circumstances in which sterilisation of children might be
justified, and in the Family Law Council’s view, these circumstances are limited to those
where:

the procedure is necessary to save the child’s life or prevent serious damage to her
physical or psychological health; and

where relevant, less permanent means of contraception have been explored and ruled
out and / or there’s been an evaluation of the her response to training in menstrual
management; and

the procedure is in her best interests.46
The Western Australian Law Reform Commission’s conclusion is somewhat less
restrictive. It would allow sterilisation of a child where:

failure to carry out a procedure involving sterilisation is likely to result in the child’s
physical or mental health being seriously jeopardised, or in the suffering of pain, fear
or discomfort of such severity and duration or regularity that it is not reasonable to
expect the child to suffer that pain, fear or discomfort; or

failure to carry out the procedure is likely to result in a real risk that a girl under 18
will become pregnant; she does not, and never will, have any real understanding of
sexual relationships, pregnancy or motherhood; and allowing her to become pregnant
and give birth in such circumstances is likely to cause her to suffer trauma, prior to, at
the time of or after the birth, which it would not be reasonable to expect her to suffer;
or

a girl under 18 has commenced menstruation or is virtually to commence
menstruation in the near future; the procedure is necessary to avoid grave and unusual
problems or suffering which are or would be involved in menstruation and which are
such that, according to general community standards, it would be unfair to require the
child to bear the additional burden of them; and

sterilisation is a last resort and there is no other realistic alternative.47
45
Family Law Council 1994, at P 52; Western Australian Law Reform Commission at Pp 78-84
Family Law Council at P 53
47
Western Australian Law Reform Commission at Pp 84-85
46
(ii)
The therapeutic/non-therapeutic distinction
The majority in Marion distinguished sterilisations which are “a by product of treatment
appropriately carried out to treat some malfunction or disease.” In his dissenting
judgement, Brennan J characterised it somewhat differently, stressing that
“proportionality and purpose are the legal factors which determine the therapeutic nature
of medical treatment.”48 Later, the majority in PvP referred to non-therapeutic
sterilisations by way of contrast as “planned sterilisations.”49
However characterised, the distinction is fundamental. Marion establishes it as marking
the boundary in Australian law between those sterilisations which can lawfully be
authorised by the parents or guardians of a child (who cannot herself consent) and those
which, while they might be lawful, are only lawful if authorised by a court or tribunal. If
the boundary is uncertain, so too is the promise of heightened accountability in decision
making and the protection afforded to children in law from what the High Court has
identified as the ‘significant risk’ of ‘particularly grave’ abuse of their fundamental
human right to bodily integrity.
The majority in Marion recognised that it might be problematic:
“We hesitate to use the expressions ‘therapeutic’ and ‘non-therapeutic’ because of their
uncertainty. But it is necessary to make the distinction, however unclear the dividing line
may be.50”
Deane J spelt out the problem in his dissenting judgement. He commented that the
borderline between therapeutic and non-therapeutic sterilisation is not only far from
precise but where psychiatric illness is involved might be all but meaningless. He added
that while sterilisation to avoid ‘the special and aggravated problems of menstruation’ for
a child with intellectual disability is often described as therapeutic, it didn’t appear to him
to be carried out for what he would describe as conventional medical reasons.51
Subsequent commentary agrees with him, and seeks to rule out the possibility of
uncertain boundaries allowing non-therapeutic procedures to escape proper scrutiny
through honest mistake, misconception or manipulation. Well it might.
Consider this remark from a senior medical practitioner commenting on the lack of
certainty in the distinction between therapeutic and non-therapeutic procedures:
48
Marion, at P 274. In his view, the distinction marks the boundary between those sterilisations which can
lawfully be authorised (by parents) and those which can’t lawfully be authorised whether by courts or
parents. Earlier, at P 269, he defined medical treatment as therapeutic “when it is administered for the
chief purpose of preventing, removing or ameliorating a cosmetic deformity, a pathological condition or a
psychiatric disorder, provided the treatment is appropriate for and proportionate to the purpose for which it
is administered.”
49
PvP, at P 553.
50
Marion, at P 250.
51
Marion, at Pp 296-297.
“The reality of the situation often is that intellectually handicapped girls have difficulty
with personal hygiene associated with menstruation and with avoiding pregnancy. The
operation of choice to cover both these conditions is hysterectomy. [We] are unsure in
this case which is the major indication and thus we are unsure as to whether … court or
parental consent is required”52
The assumption that hysterectomy to ‘treat’ difficulty with personal hygiene is a clear-cut
example of a therapeutic procedure is breathtaking. Procedures are therapeutic only if
they are carried out to treat some ‘malfunction or disease’, and then only if they are
‘appropriate for’ and ‘proportionate to’ that purpose. Difficulties with personal hygiene
do not constitute malfunction or disease, and it is highly contentious indeed to assert so
unquestioningly that hysterectomy is an appropriate and proportionate response. It would
be a travesty of heightened accountability if sterilisation in these circumstances escaped
scrutiny disguised as therapeutic, for it calls out for a thorough exploration of alternative
and less invasive solutions.
The Family Law Council notes that “in general, respondents [to its Discussion Paper of
October 199353] were of the view that there is no satisfactory way of making a distinction
between therapeutic and non-therapeutic procedures.” 54 It quotes many submissions to
this effect, including submissions from the Australian Medical Association and the Royal
Australian College of Obstetricians and Gynaecologists, but also a contrary view from
the Australian College of Paediatrics.55
For its part and for these reasons, the Council sees the distinction as having “no merit” as
a basis for distinguishing sterilisation procedures which may be consented to by parents
or guardians.56
The Law Reform Commission of Western Australia comes to the same conclusions for
the same reasons, commenting that “in taking this view the Commission is influenced by
the considerable difficulties in applying the therapeutic / non-therapeutic distinction in
practice, as pointed out in particular by the medical profession.”57
Both conclude that heightened accountability requires that sterilisation of children should
be unlawful unless authorised by a court, whatever its purpose.
Two points should be made about this conclusion:

52
it has an obvious and regrettable consequence. It would mean that court authorisation
would be required even for those sterilisations of children which are indisputably
therapeutic, however slippery the slope. It will put a court between a child and
medical treatment which is clearly indicated, which is not disputed, and which is in
Quoted in Western Australian Law Reform Commission at P 61
Family Law Council, 1993
54
Family Law Council, 1994 at p. 11
55
Ibid., at pp 11, 12, and 13 respectively.
56
Ibid., at pp 44-45.
57
Ibid., at pp 93-94.
53
and of itself entirely uncontroversial (e.g. hysterectomy to treat cancer).

it relies on an implicit prediction that unless all sterilisations proceed to courts or
tribunals for determination some at least will escape the heightened accountability
they require to ensure that the children’s best interests are adequately protected. It is
to say that a definitional ‘grey area’ will allow non-therapeutic procedures to slip
through the net whether by honest mistake, misconception or manipulation.
The first point puts a premium on the need for legislative reform of exactly the sort the
High Court identified in Marion’s Case because ‘it is too costly for most parents to fund
court proceedings, … delay is likely to cause painful inconvenience, and … the strictly
adversarial process of the court is very often unsuitable for arriving at this kind of
decision.’
The second point invites the question whether this degree of pessimism is necessary.
One would have thought not. It doesn’t follow from the fact that it’s sometimes hard to
decide whether or not a sterilisation is therapeutic that it is hard to decide whether to seek
court authorisation. Any grey area is easily settled. Good faith and ordinary prudence
both suggest a common sense solution: err on the side of caution; if it’s not indisputably
therapeutic, ask.
This is no more than risk management at its most simple: if all but indisputably
therapeutic sterilisations proceed to court, then children whose sterilisation warrants
heightened accountability will be assured it, medical practitioners who might otherwise
be acting unlawfully will be protected from liability, and the issues will reduce to what
must be asked of any sterilisation procedure in any event - is it in the child’s best interests
now and into the future?; have all alternative and less invasive procedures failed?; is it
certain that no other treatment or procedure will work?58
The only question that arises is whether the category of ‘indisputably therapeutic’
sterilisations is itself sufficiently certain.
Surely it is. There are some simple tests. One was implied in a number of submissions to
the Family Law Council which sought not to reject but to reframe the distinction between
therapeutic and non-therapeutic sterilisations. They might have been marking out a
category of indisputably therapeutic sterilisations.
The Children’s Interests Bureau, for example, commented that the distinction would have
validity if ‘therapeutic’ referred only to the removal of a physically diseased part of the
body.59 For its part, the Queensland Department of Family Services proposed that
The Chief Justice of the Family Court made the point when Marion’s Case returned to that jurisdiction
after the High Court had settled the points of law: “Ironically enough, this case probably falls into the
category of cases where the court’s consent is unnecessary since, on the facts as I have found them, the
procedure was required for medical and therapeutic reasons. It was nevertheless both prudent and correct
for the applicants to have sought the consent of the court, as this issue … could well have been the subject
of controversy.” 1992 Fam LR 336 at P 355.
59
Quoted in Family Law Council at P 11-12.
58
therapeutic sterilisations be defined to include only those which are necessary because
there is a physiological condition which threatens life or permanent damage to bodily
health, for example cancer of the uterus or ovaries, and non-therapeutic sterilisations as
‘elective surgery’ carried out for reasons of fertility and / or menstrual management.60
The ‘but for’ test identifies indisputably therapeutic sterilisations equally well in readily
understood operational terms: ask whether sterilisation would be recommended in the
same clinical circumstances but for the girl’s intellectual disability. If so, regard it as
indisputably therapeutic. If not, it may yet be in the girl’s best interests, but regard it as
non-therapeutic and seek court or tribunal authorisation.61
Summary
The law established in Marion’s Case and which applies in all Australian States and
Territories is that:

court or tribunal62 authorisation is required for any sterilisation procedure carried out
on a child except those which are “appropriately carried out to treat some malfunction
or disease”; and

a court or tribunal can give its authorisation if and only if sterilisation is “in the
child’s best interests” after “alternative and less invasive procedures have all failed or
it is certain that no other procedure or treatment will work”.
The reasoning underlying the decision is fundamental. The High Court came to its
decision:

in order to achieve a heightened accountability in decision making to sterilise
children when it is proposed for other than therapeutic purposes; because


60
in the absence of heightened accountability there is a significant risk of wrong
decisions being made; and
if wrong decisions are made, there are particularly grave consequences for the
fundamental human rights of the child.63
Ibid., at P 12-13.
Nicolson CJ rejected the ‘but for’ test in PvP No.2 (1994 19 FamLR 1), but that was as a test of whether
sterilisation is in a child’s best interests. Here it is proposed not as a test of the child’s best interests, but of
whether the sterilisation is or isn’t therapeutic (and hence of whether the question of the child’s best
interests ought have the heightened accountability of going before a court or tribunal for determination).
62
The Family Court of Australia in all states and territories, but with concurrent jurisdiction being
exercised in SA by the Guardianship Board in NSW by the Guardianship Board and the Supreme Court in
respect of children who are 16 or 17 years of age and under 16 years of age respectively.
63
The reasoning applies not only to non-therapeutic sterilisations but to other ethically sensitive and / or
disputed medical treatments also, giving rise to the Family Court’s “extended” or special medical
procedures jurisdiction - see Brady, SM and Cooper, DM.,(1996) A Question of Right Treatment - Special
Medical Procedures and the Family Court - An Introductory Guide, Family Court Publication, Melbourne.
61
However commentators agree that the best interests test is too capable of widely
divergent interpretation, and urge law reform. This is because:



the circumstances calling for decision vary considerably from case to case, making
comparison difficult;
decision making is often heavily reliant on highly subjective judgement and
speculative prediction about what the future holds; and
neither courts nor parents are well equipped with the experience, information or
perspective to critically test the assumptions and mythologies which underlie the
commonly accepted arguments that sterilisation is in the (intellectually disabled)
child’s best interests.
Commentators are also critical of the distinction between therapeutic and non-therapeutic
sterilisations because of its lack of certainty, and urge law reform for this reason also.
This is because:


sterilisations for some purposes which call out for a thorough exploration of
alternative and less invasive alternatives are commonly regarded as being
‘therapeutic’ in the case of girls with intellectual disability, even in the absence of any
identifiable ‘malfunction or disease’ for which sterilisation would otherwise be
regarded as appropriate ; and
if the distinction is uncertain, so too is the promise of heightened accountability and
the protection afforded to children in law from the ‘significant risk’ of ‘particularly
grave’ abuse of their fundamental right to bodily integrity.
Pessimism may be justified, but ethical professional practice can of itself ensure the
heightened accountability the High Court sought to achieve. Court or tribunal
determination of whether non-therapeutic sterilisation is in a girl’s best interests can be
assured simply by medical practitioners and hospital administrators making sure that
none but ‘indisputably therapeutic’ procedures are performed without court or tribunal
authorisation.
Indisputably therapeutic sterilisations are readily identifiable by a simple test which asks
for no more than good faith and ordinary prudence: would sterilisation be recommended
but for the girl’s intellectual disability?
Legislative reform is urgent and overdue if medical professionals can’t address these
issues through self regulatory frameworks specifying ethical and professional best
practice. It’s urgent and overdue in any event for exactly those reasons the High Court
identified in Marion, none more so than to ensure that heightened accountability in
decision making about the sterilisation of children doesn’t come packaged with the
powerful disincentive of an additional financial burden of legal costs on the families of
children with intellectual disability.
3. Medical Approaches to Sterilisation of Children, and Appropriate
Alternatives
This chapter is written in plain english and is not necessarily precise in its use of
technical medical terminology. It is intended to give accurate but basic information only
about the relevant medical procedures and their outcomes, not detailed clinical
descriptions or medical opinion.
What is Sterilisation?
Sterilisation involves a surgical procedure which results in the permanent loss of
reproductive capacity.
Sterilisation procedures include hysterectomy, tubal ligation, endometrial ablation and bilateral oophorectomy.
A)


Hysterectomy
will cause permanent cessation of menstruation by removing the uterus
will result in permanent infertility
There are a number of types of hysterectomy procedures.
(i)
partial hysterectomy
 sometimes called sub-total hysterectomy
 is the removal of the body of the uterus
 after surgery the cervix and the stump of the uterus remain requiring regular pap
smears
(ii)
total hysterectomy
 sometimes called complete hysterectomy
 is the removal of the uterus, including cervix
 the ovaries and tubes are not removed
 the female will continue to ovulate but will no longer have menstrual periods, instead
the egg is absorbed by the body
(iii) total hysterectomy with removal of ovaries
 sometimes called total hysterectomy with bilateral salpingo-oophorectomy
 is the removal of the uterus, cervix, fallopian tubes and both ovaries
 this surgery is usually to treat widespread reproductive tract cancer or in post
menopausal women where ovarian function has ceased
(iv)
radical hysterectomy
 is the removal of the uterus, cervix, fallopian tubes, ovaries and the upper part of the
vagina

B)


C)


D)




this surgery is usually to treat widespread reproductive tract cancer
Endometrial Ablation
is a recently developed surgical procedure using advanced diathermy or laser
technology to attempt to remove the lining of the uterus (the endometrium), thus
causing bleeding to cease or diminish
is predominantly used with women who have heavy bleeding and do not wish to have
any further pregnancies
Bi-lateral Oophorectomy
is the removal of both ovaries, usually to treat widespread reproductive tract cancer
is a very serious procedure where the ovaries are functioning or have the potential to
function because removal of the ovaries will cause a cessation of hormone production
and hence menopause64
Tubal Ligation
is sometimes called a tubal sterilisation
will cause cessation of fertility by blocking the female egg from moving to the
position where it can be fertilised by the male sperm
the woman will be infertile but will continue to ovulate and menstruate
the procedure is considered permanent but depending on the technique used may be
reversible
There are several type of tubal ligation operations. In all of them the woman’s fallopian
tubes are closed. This can be done by:



cutting out a section of the tube and tying the cords with surgical thread
leaving the tubes intact and placing rings or clips over them
sealing the tubes by an electric current which acts to block the passage (diathermy)
Girls and medical issues relating to gynaecological health
The pathologic processes in children and young women are significantly different from
those of their adult counterparts. Sterilisation is rarely appropriate, and then only as ‘a by
product of surgery appropriately carried out’ to treat either diseases of the reproductive
tract or severe menstrual disorders.
A)
64
Diseases of the reproductive tract
There are other risks which include osteoporosis, heart disease, bone and joint pain, fatigue, and dry skin
and tissue. It can also impact upon mood and cause depression. Long term hormone replacement therapy
(HRT) does not fully compensate for the functions of the ovaries.
Conventional medical approaches to diseases of the reproductive tract may include
hysterectomy, endometrial ablation and bi-lateral oophorectomy. However disease of the
reproductive tract is a very rare occurrence in young women65, and it follows that it is a
very rare circumstance that invasive surgery like hysterectomy, endometrial ablation or
bi-lateral oophorectomy is required for ‘indisputably therapeutic’ or conventional
medical reasons. (See Appendix 2 for rates of reproductive tract cancer).
These rare circumstances include:

malignancies of the genital track
Occasionally chemotherapy from other cancers results in the loss of ovarian function but
ovaries are not removed if they fail for this reason. Studies indicate that modern
treatment for cancers seems unlikely to be sterilising, although treated women may be at
risk of premature menopause.66

non-malignant disease effecting both ovaries
A recently completed 10 year review of ovarian pathology at the Victorian Royal
Children’s Hospital has found no case of bi-lateral oophorectomy for bilateral ovarian
disease, for torsion of both ovaries or for loss of function of both ovaries. The study in
Victoria’s ‘premier’ children’s hospital provides strong evidence for the proposition that
these types of conditions are exceedingly rare in children and young women67

benign conditions such as congenital abnormalities68
The literature identifies one case for major pelvic infection following surgery aimed at
correcting a congenital abnormality involving the uterus and lack of vagina69 and the
other for torsion of the uterus. The latter is also exceedingly rare with only two other
65
Disease at the sites of ovaries and uterus is very rare, genital tumours in girls and young adolescents are
very rare, malignant lesions of the vulva are rare, include sarcoma’s, adenocarcnomas, and squamous cell
carcinoma and tumours which result in bleeding are very uncommon congenital periurethral cysts are rare,
both endometrial sinus tumour of the vagina and the cervix and cervical carcinoma are rare in the paediatric
population, benign endometrial polyps and submucous myomas are uncommon causes of vaginal bleeding
in children, and adenocarcimona is exceedingly rare , however, benign ovarian cysts are common in
teenagers. if they are less than 6 cms in diameter there is no need for exploration. most genital tumours in
girls are ovarian with one third of ovarian neoplasms in pre-menarche girls. See for further discussion;
Baldwin & Landa, 1995.
66
Hamish, W., Wallace, B., & Kelnar, J. (1996), Late effects of antineoplastic therapy in childhood on
growth and endocrine function. Drug safety, 15(5), 325-332.
67
Grover, S., Dr. (1997b), A Ten year Clinical Review of Ovarian Pathology at the Royal Children's
Hospital Melbourne : unpublished.
68
There is a group of females with XY chromosome who have gonadectomies (the removal of residual
non-functional gonadal tissue and in early utero the testes development fails so that the foetus develops as a
female with uterus and vagina but no ovaries. This condition is known as gonadal dysgenesis and is rare. It
could not account for the HIC numbers.
69
Fliegner, J. R., & Pepperell, R. (1994), Management of vaginal agenesis with functioning uterus, Is
hysterectomy advisable? Australian New Zealand Journal of Obstetrics and Gynaecology, 34(4), 467-70.
similar cases reported in the literature.70
B)
Menstrual disorders
Menstrual problems are common at the beginning and end of the fertile period in
women’s lives. Irregularities related to the menstrual cycle frequently occur in young
adolescent girls age 9 to 15 years and are sometimes brought to the attention of general
practitioners and paediatricians.71 Most of these problems are minor and can be resolved
with reassurance and education about the wide variation in normal development during
puberty.72
Some conditions, however, can be properly termed as disorders and require further
investigation and treatment. Common disorders include;



dysmenorrhoea (discomfort and pain associated with menstruation),
menorrhagia (excessive menstrual loss73), and
pre-menstrual syndrome (negative mood changes).
Surgical interventions are rarely indicated for these conditions in young women.
Dysmenorrhoea and menorrhagia in the absence of disease is managed by hormone
therapy and/or a range of other drug regimes. It is only when medical management fails
that surgery is considered and in these cases a secondary pathologic cause is often
uncovered.74
Pre menstrual syndrome (PMS) is not an indication for surgery. Studies suggest that
there are no objective criteria for the diagnosis of PMS, and that definitions of the
syndrome vary widely. Clinically significant PMS is experienced infrequently by young
70
Stein, J., Grover, S., Pickworth, F., & Stokes, K. (1995). Uterine Torsion masquerading as
Hydrometrosalpynx. International Paediatric and Adolescent Gynaecology.
71
Coupey, S. M., & Ahlstrom, P. (1989), Common Menstrual Disorders. Paediatric Clinics of North
America, 36(3), 551-573.
72
Abraham, S., Fraser, I., Gebski, V., Knoght, C., Lwelleyn-Jones, D., Mira, M., & McNeil, D. (1985).
Menstruation, Menstrual Protection and Menstrual Cycle Problems : The Knowledge, Attitudes and
Practices of Young Australian Women. Medical Journal of Australia, 142, 247-251; Baldwin, D., D, &
Landa, H. (1995a). Common Problems in Paediatric Gynaecology. Urologic Clinics of North America,
22(1), 161-176; Carlson, G., Taylor, M., Wilson, J., & Griffin, J. (1994). Menstrual Management and
Fertility Management for Women who have Intellectual Disability and High Support Needs : An Analysis
of Australian Policy, Queensland: Department of Social Work and Social Policy, University of Queensland;
Carlson, G., & Wilson, J. (1996). Menstrual management and Women who have Intellectual Disabilities :
Service Providers and Decision-Making. Journal Intellectual Developmental Disability, 21, 39-57; Grover,
S. (1997a), Menstrual and contraceptive management for women with intellectual disabilities, Royal
Australian College of Obstetricians and Gynaecologists Bulletin, 11(2), 12-14; Grover, S. D. (1997c, April
1997), Menstrual and contraceptive management for women with an intellectual disability, Paper presented
at the Royal Australian and Royal New Zealand Colleges of Obstetricians and Gynaecologists combined
Scientific meeting, Brisbane.
73
Excessive menstrual loss means soaking blood loss with pain, lasting 8-10 days every 16-18 days, and
continuing over a significant time.
74
Coupey 1989
girls and adolescents, however, it becomes more prevalent as women get older. To date
aetiology and underlying patho-physiologic mechanisms leading to symptoms of PMS
have not been identified.75 Most adolescents should be managed with reassurance, dietary
and exercise modifications.76
Girls with intellectual disability and menstruation
A diagnosis of intellectual disability does not by itself constitute a clinical reason for
sterilisation. The onset of menstruation is the same in girls with77 and without
intellectual disability78, and girls with intellectual disability present with the same types
of common menstrual problems79 as the rest of the young female population. There is a
very rare occurrence in girls of disease at the sites of ovaries and/or uterus.80
It follows that the sterilisation of girls with intellectual disability ‘as a by product of
surgery appropriately carried out to treat some malfunction or disease’ is rare and should
be no more common among girls with intellectual disability than it is among their nondisabled peers.
While therapeutic sterilisation of girls with intellectual disability is rare, it does not
follow that non-therapeutic sterilisation cannot be justified. In certain circumstances it
may yet be justified as being in the girl’s best interests.
It is an often held view that it is. Hysterectomy and endometrial ablation are commonly
taken to be appropriate tools in the management of the menstruation of girls with
disability, particularly when it presents as difficult because of heavy and ongoing
bleeding, persistent pain or cyclical mood swings and idiosyncratic or other ‘problem’
75
Dennerstein, L., Brown, J., Gotts, G., Morse, C., & Pinoi, A. (1993). Menstrual Cycle Hormonal Profiles
of Women with and without Premenstrual Syndrome. Journal of Obstetrics and Gynaecology, 14, 259;
Dennerstein, L., Wood, C., & Westmore, A. (1995). Hysterectomy : New Options and Advances.
Melbourne: Oxford University Press; Dennestein, L. (1978). Gynaecology, Sex and Psyche. Melbourne:
Melbourne University Press.
76
Carlson et al., 1994; Carlson & Wilson, 1996; Office of Intellectual Disability Services. (1990).
Menstrual Management Policy for Women with Intellectual Disabilities, Melbourne: Department of
Community Services; Queensland Department of Families Youth and Community Care, (1995). The
Menstrual Preparation and Management Kit, Brisbane: Department of Social Work and Social Policy,
University of Queensland.
77
Elkins, T., Gafford, L., Wilks, C., & al, e. (1985). A model clinic approach to the reproductive health
concerns of the mentally handicapped. Obstet Gynecol, 68, 185-188; Goldstein, H., M. (1988). Menarche,
Menstruation, Sexual Relations, and Contraception of Adolescent Females with Down Syndrome,.
European Journal of Obstetrics Gynaecology and Reproductive Biology, 27, 343-349.
78
Abraham et al., 1985. In some instances, however, puberty appears to be delayed due to low body weight
- peronal observation Dr Sonia Grover, 1997.
79
Coupey 1989
80
Baldwin & Landa, 1995b; Fliegner & Pepperell, 1994; Goldstein, 1988; Grover, 1997b; Imai, A., Furui,
T., & Tamaya, T. (1994), Gynaecologoic tumours and symptoms in childhood and adolescence:10 years
experience, Int J Gynecol Obstet, 45, 227-234; Moen, M., Cliby, W., & Wilson, T. (1993). Case report Stage III Papillary Serous Cystadenocarcinoma of the ovary in a 15 year old female. Gynecologic
Oncology, 53, 274-276; Monaghan, J. M. M., (1996). Less invasive surgery for gynecologic tumours.
Current Opinion in Oncology, 8(5), 402-406.
behaviour81.
Surgery however is very rarely the option of genuine last resort. There is powerful
evidence arising from both clinical and legal settings that less invasive medical and
developmental alternatives work if only they are actively explored. For example:

Elkins describes a 'model clinic' where an approach based on counselling and
education was trialed as an alternative for sixteen women with intellectual disabilities
originally referred for hysterectomy. In none of these cases was hysterectomy found
to be necessary and appropriate for reasons of menstrual or fertility management.82

Grover reports that over an eight year period only two out of fifty-nine girls referred
for investigation of menstrual difficulties required surgical intervention - one by way
of abdominal hysterectomy, and the other by endometrial ablation as the less intrusive
procedure in the circumstances.83

Ford describes the (not atypical) case of Re W in the jurisdiction of the New South
Wales Guardianship Board. Authorisation was sought for hysterectomy on the
grounds that W suffered substantial distress as a result of continual heavy bleeding.
The Board adjourned the hearing so that a contraceptive pill with higher doses of
hormones could be trialed. The treatment was successful and surgery was no longer
necessary.84

Brady describes from long experience in the jurisdiction how most parents seeking
the Family Court’s authorisation of the proposed sterilisation of their daughter with
intellectual disability have not at the time of application been provided with any
information about medical or developmental alternatives of a less invasive nature.
Where there are protocols and guidelines in place which ‘divert’ matters from court
until parents been provided with the opportunity to explore the options, they rarely
proceed with their application. Nine out of eleven matters were ‘diverted’ in this way
in Victoria in 1993, and seven out of eight in Queensland in 1995. She describes
these as success stories because “the families and children involved received services
such as respite care, home-help, and needs-based developmental programs, and the
child retained a functioning organ and her bodily integrity.”85
81
Phobic responses to blood or smearing are considered to be problem behaviours. Phobic responses to
blood loss are extremely rare and in most cases regarding young women with intellectual disabilities can be
addressed through appropriate needs based behaviour management programs. Carlson 1994, 1996
comments that most young women will not have had pre menstruation education or received any
menstrual support.
82
Elkins et al., 1985
83
Grover, S Menstrual and Contraceptive Management for Women with Intellectual Disability, Paper
presented to the Combined Scientific Meeting of the Royal Australian and New Zealand Colleges of
Obstetricians and Gynaecologists, 1997
84
Ford, J 1996 The Sterilisation of Young Women with Intellectual Disability, Australian Journal of
Family Law, 10, P.236 at P.245.
85
Brady, S., 1996, Invasive and Irreversible, Alternative Law Journal, Volume 21, Number 4
Surgical intervention is only rarely necessary in the absence of disease, and difficult to
justify. Sterilisation in these circumstances is in the main a response not to clinical
medical need but to disability. It reflects persistent negative attitudes towards fertility,
menstruation and menstrual management in young women with intellectual disability.86
Intervention to eliminate menstruation prior to its onset is particularly difficult to
justify.87 The pattern of menstrual loss, and any associated symptoms and behaviours are
impossible to predict and rely on speculative assertion at best.
The reasons that are frequently given in support of sterilisation being in the best interests
of girls with intellectual disability, the reasons why great caution should be exercised
before these reasons are accepted, and the less invasive alternatives which in any event
should first be tried and excluded each warrant further discussion.
(i)
Reasons that are commonly given in support of the sterilisation of girls with
intellectual disability by way of hysterectomy and endometrial ablation88

resolving pain and physical discomfort such as cramps and “heavy” bleeding which
may be associated with menstruation;

ameliorating other medical conditions that might be effected by hormonal
fluctuations, such as epilepsy;

ameliorating mood swings and behaviour thought to be associated with pre-menstrual
86
Carlson et al., 1994; Carlson & Wilson, 1996; Chamberlain, A., Rauh, J., Passer, A., McGrath, M., &
Burket, R. (1984). Issues in fertility control for mentally retarded female adolescents:1. Sexual activity,
sexual abuse and contraception. Paediatrics, 73(4), 445-450; Committee on Bioethics, A. A. O. P. (1990).
Sterilisation of Women who are Mentally Handicapped. Paediatrics, 85(5), 868-871; Family Education
Unit Inc. (1989). Management of Menstruation and Related Issues. (Vol. Kit No.8). North Ryde, NSW;
Kaur, H., Butler, J., & Trumble, S., (1995a). Menstrual Management and Women with an Intellectual
Disability - A Guide for GP's . Melbourne: Developmental Disability Unit, Department of Community
Medicine & General Practice, Monash University; Kaur, H., Butler, J., & Trumble, S., (1995b). Options for
Menstrual Management - Resources and Information for Staff and Carers of Women with an Intellectual
Disability. Melbourne: Developmental Disability Unit; Department of Community Medicine and General
Practice, Monash University; O.Neill, N. (1996). Sterilisation of Children with Intellectual Disabilities.
Australian Journal of Human Rights, 2(2); Office of Intellectual Disability Services, 1990; Queensland
Department of Families Youth and Community Care, 1995; Richman, G., Reiss, M., & Bailey, J. (1984),
Teaching Menstrual Care to Mentally Retarded Women: acquisition, generalisation, and maintenance. J
Appl Behav Anal, 17(4), 441-451; Tasmanian Department of Education and the Arts. (1994). Draft
Statement on Menstrual Management and Fertility Management for Girls and Women with Intellectual
Disabilities. : Special Education Committee; Taylor, D. (1988). Red flower : Re-thinking Menstruation.
California: The Crossing Press; Taylor, M., Carlson, G., Griffen, J., & Wilson, J. (1995). Managing
Menstruation. (3rd edition ed.). Brisbane: Queensland Department of Families Youth and Community
Care; Trumble, S., (1992). Menstrual Suppression in Women with Intellectual Disabilities
unpublished.Melbourne: Department of Community Medicine Monash University; Villamanta Legal
Service Inc. (1991). Submission to the Intellectual Disability Review Panel Review of Menstrual
Suppressants Geelong.
87
Grover, 1997a; Grover, 1997c
88
Brady SM and Cooper DM, (1996). A Question of Right Treatment: The Family Court And Special
Medical Procedures for Children - An Introductory Guide, Family Court Publication, Melbourne.
tension or menstruation;

resolving difficult or inappropriate social behaviours associated with menstruation, or
emotional reactions to menstruation;

permanently stopping menstruation to remove the young woman’s personal care tasks
associated with menstrual management;

easing the burden on parents and carers by eliminating menstrual management and
related personal care tasks;

eliminating the need for the young woman to learn personal care skills associated
with menstruation;

reducing the need for the young woman to be informed about menstruation and
fertility or to learn protective behaviours; and

preventing pregnancy.
Alternative and less invasive ways of addressing these issues89
(ii)

pain relief strategies or medication can be effective if the young woman is
experiencing menstrual discomfort;

behaviour management strategies can resolve difficulties caused by inappropriate
behaviours associated with menstruation and to inform and reassure the young
woman if she has emotional reactions to menstruation;

self help skills development programs can be effective in teaching the young woman
to manage the personal care tasks associated with menstruation, reducing the
demands on families and carers, as can behaviour support and management
techniques ranging from aids and equipment to changes in types of clothing worn;

alternatives to sterilisation such as the contraceptive pill, depo provera injections or a
range of other options will be appropriate if the young woman is sexually active;

human relations education and training and support programs in life skills and
protective behaviours are appropriate if there are concerns a girl at risk of sexual
assault, as is a review of her personal support and supervision;

a diverse range of family support services over and above those already listed such as
in and out of home respite care, recreational and activities programs will provide
powerful support to families.
89
Ibid.
(iii) Responses to the reasons commonly given in support of sterilisation of girls
with intellectual disability by way of hysterectomy and endometrial ablation

the reasons about mood swings and behaviour changes:
Hysterectomy will not resolve mood swings or behaviour unless both ovaries are
removed.90 Removal of the ovaries will drastically compromise both short and long term
health and well-being.91 It will cause immediate menopause with a markedly increased
risk of osteoporosis.92 It will increase the risk of ischaemic heart disease. 93
Research suggests that reproductive function, mood and behaviour have been too closely
linked for too long. Preliminary findings indicate that there is a fundamental flaw in
medicalising moods and behaviour by attributing them to uterine function and/or the
menstrual cycle rather than environmental factors and stresses. Many of the associations
to date between the menstrual cycle and mood swings are oversimplified and in the words
of the United States Office of Technology Assessment are "based on myths, unwarranted
assumptions and conclusions derived from outdated, poorly constructed studies."94
Preliminary findings from the Key Centre for Women’s Health in Melbourne are that
stress and depression may be major issues in premenstrual syndrome (PMS) and that
measurable hormonal fluctuations between sufferers of PMS and the normal population
are negligible.95
This research casts significant doubt on past assumptions and suggests it is too easy to
attribute mood swings and behaviours to menstruation, and to ignore what may be going
on in the young person's life. The symptoms may be manifestations of stressful
environments or adolescence. Experience often shows that after hysterectomy moods and
behaviour have not significantly changed and that parents who have sought sterilisation
on this basis are disappointed. It is common for the behaviours then to be reframed and
explained as a result of increasing inability to deal with frustration or of an increasingly
90
Dennerstein, L., Brown, J., Gotts, G., Morse, C., & Pinoi, A. (1993). Menstrual Cycle Hormonal Profiles
of Women with and without Premenstrual Syndrome. Journal of Obstetrics and Gynaecology, 14, 259;
Dennerstein, L., Wood, C., & Westmore, A. (1995). Hysterectomy : New Options and Advances.
Melbourne: Oxford University Press; Grover (1991) Review of Menstrual Suppressants - a submission to
the Intellectual Disability Review Panel, Victoria.
91
Dennerstein et al., 1995
92
Oliver, M., & Boyds, G. (1987). Effect of bilateral ovariectomy on coronary artery disease and serum
lipid levels. Lancet, ii, 16-24; Syanberg, L., & B, A. (1975). On some late effects of bilateral oophorectomy
in the age range of 15-30 years. Obstet Gynecol Scand, 54, 449-461; Siddle, N., Sarrel, P., & Whitehead,
M. (1987). The effect of hysterectomy on the age at ovarian failure : identification of a subgroup of women
with premature loss of ovarian function and literature review. Fert Steril, 47, 94-100; Watson, N., Studd, J.,
Garnett, T., Savvas, M., & Milligan, P. (1995). Bone loss after hysterectomy with ovarian conservation.
Obstet Gynecol, 86, 72-77; Nishiyama, 1986 169; MG, 1991 175; Grover, 1997 115; Grover, 1997 112]
93
Oliver & Boyds, 1987; Punnonen, R., Ikalainan, M., & Seppala, E. (1987). Premenstrual Hysterectomy
and the Risk of Cardio-Vascular Disease. The Lancet, May(16), 1139.
94
Office of Technology Assessment. (1992). The Menopause, Hormone Therapy and Women's Health .
Washington: United States Congress.
95
Vaneslow, W., 1995, Paper presented to the Australian Society of Psychomatic Obstetrics and
Gynaecology, Melbourne.
difficult personality.
Hysterectomy is unlikely to markedly influence difficult behaviours. Individual needs
based behaviour management programs are more likely to be successful, and will assist
the young woman to develop skills to cope with frustration in daily living as well as a
range of other useful social skills.

the reasons about better management of epilepsy:
Hysterectomy may not necessarily improve epilepsy. Hormonal fluctuations do not cause
epilepsy but may increase cyclical seizure activity. Increased cyclical seizure control is
likely to be insignificant if the ovaries are not removed.96 If ovaries are removed then
future health and well-being will be drastically compromised (as described above).
Notably, sterilisation is not ‘a treatment of choice’ for girls with epilepsy who do not
have intellectual disability.

the reasons about menstrual management:
Studies have illustrated that there is a poor correlation between pad changing,
independence and other self care and functional hand activities, thus suggesting a lack of
access to menstrual management teaching. Lack of support and educational opportunity
is further illustrated by inappropriate behaviours such as smearing which can be
addressed by menstrual preparation training for young women.97
Hysterectomy does remove the difficulties families and carers experience with
management of menstruation98 but it does not remove daily toileting management. This
is also a significant nursing management issue if the child is dependent in this way.
Interestingly, consideration is never given to the installation of a colostomy bag for
toileting difficulties. It is considered inappropriate and medically unnecessary in these
circumstances because there is no disease in the bowel and urinary tract. Arguments for
elimination of menstruation in relation to nursing management and inappropriate
96
Crawford, P. (1991). Catamenial Seizures : Women and Epilepsy, Women and Epilepsy . Chichester:
Wiley and Sons Ltd.; Logue, C., & Moos, R. (1988). Positive Peri-Menstrual Changes: towards a new
perspective on the menstrual cycle. Journal of Psychosomatic Research, 12(1), 31-40; Rosenfield, W.,
Doose, D., Walker, S., & Nayak, R. (1997). Effect of topiramate on the pharmacokinetics of an oral
contraceptive containing norethindrone and ethinyl in patients with epilepsy. Epilepsia, 38(3), 317-323;
Tauboll, E., Lundervold, A., & Gjerstad, L. (1991). Temporal distributions of seizures in epilepsy.
Epilepsy-Res, 8(2), 153-65; Usiskin, S. (1991). The Woman with Epilepsy, Women and Epilepsy .
Chichester, England: Wiley and Sons Ltd.
97
Carlson 1994
98
Kaur, H., Butler, J., & Trumble, S., (1995b). Options for menstrual management - Resources and
Information for Staff and Carers of Women with an Intellectual Disability, Melbourne: Developmental
Disability Unit, Department of Community Medicine and General Practice, Monash University; Melita, B.,
Bartak, L., Nyberg, E., & Armstrong, J. (1992). Report to the Minister for Community Services Victoria on
Menstrual Suppressants, Melbourne: Intellectual Disability Review Panel; Office of Intellectual Disability
Services, (1990), Menstrual Management Policy for Women with Intellectual Disabilities, Melbourne:
Department of Community Services.
behaviours are primarily about social taboos.99

the reasons about sexual abuse and the risk of pregnancy:
Sterilisation will never overcome vulnerability to sexual abuse, only pregnancy as one
possible consequence. Sexual assault is a problem for all young women, including young
women with intellectual disabilities100, and it demonstrates the need for educational and
protective behaviour programs. If vulnerability to sexual assault is a major issue of
concern, the most fruitful response is ensure that programs like these are put in place and
to review how the environment might be made more safe. Sterilisation is not an
appropriate response to fears of sexual assault.101
Indeed research suggests sterilisation may lead to a cycle of neglect and increase the
likelihood that sexual abuse will go undetected.102 If contraception is seen not to be a
concern, the young person may be less likely receive health and sexuality education,
training in protective behaviours and timely medical review. Sexually transmitted
diseases and a range of other conditions associated with sexual activity whether abusive
or consensual may be overlooked until health has been seriously compromised.103
Further, there is no data to confirm that pregnancy is a significant risk in this
99
Family Education Unit Inc. (1989). Management of Menstruation and Related Issues. (Vol. Kit No.8).
North Ryde, NSW; Kaur et al., 1995a; Laws, S. (1990). Issues of Blood : The Politics of Menstruation:
Houndmills:Macmillan; Logue & Moos, 1988; Office of Intellectual Disability Services, 1990; Queensland
Department of Families Youth and Community Care, 1995; Snowden, R., & Christain, B. (1993). Patterns
and Perceptions of Menstruation, Manuka, Australia: World Health Organisation.; Villamanta Legal
Service Inc. (1991). Submission to the Intellectual Disability Review Panel Review of Menstrual
Suppressants (submission ). Geelong.
100
Melita, 1992; Sobsey, D., Gray, S., Wells, D., Pyper, D., & Reimer-Heck, b. (1991). Disability,
sexuality and abuse : An annotated bibliography. Baltimore: Paul Brookes; Sobsey, D., & Mansell, S.
(1990). The prevention of sexual abuse of people with developmental disabilities. Developmental
Disabilities Bulletin, 18(2), 51-66; Villamanta Legal Service Inc, 1991; Chamberlain, A., Rauh, J., Passer,
A., McGrath, M., & Burket, R. (1984a). Issues in fertility control for mentally retarded female
adolescents:1. Sexual activity, sexual abuse and contraception. Paediatrics, 73(4), 445-450; Chamberlain,
A., Rauh, K., McGrath, M., & Burket, R. (1984b). Issues in fertility control for mentally retarded female
adolescents : Sexual Activity, Sexual Abuse and Contraception. Paediatrics, 73(4), 445-450.
101
Hamre-Neitupski, S., & Williams, W. (1977). Implementation of Selected Sex Education and Social
Skills to Severely Handicapped Students. Education and Training of the Mentally Retarded, 12(4), 364372. There has been broad criticism of the mental age determinant regarding access to learning
opportunities. Reasons for the criticism include the failure of service providers to consider whether or not
attempts have been made to teach skills. This is in relation to a range of daily living skills but has profound
consequences in human relations and protective behaviours education leaving young women with
intellectual disabilities particularly vulnerable to sexual abuse.
102
Baladerian, N. (1992). Treatment approaches for abuse victims who have developmental disabilities .
Culver City,CA: Disability, Abuse and Rights Protection Project; Baladerian, N. (1994). Abuse of
Children and Adults with Disabilities- A Prevention and Intervention Guidebook for Parents and Other
Advocates. Culver City, CA: Disability Abuse and Personal Rights Project; Chamberlain, Rauh, Passer,
McGrath, & Burket, 1984a; Chamberlain, Rauh, McGrath, & Burket, 1984b; Sobsey, Gray, Wells, Pyper,
& Reimer-heck, 1991; Sobsey & Mansell, 1990
103
Melita et al., 1992
population.104
 There are approximately 2,300,000 girls under 18 in Australia.105
 Of these 1.83% - 2% have some form of intellectual impairment.106
 On the argument under consideration, this means approximately 40,000 girls with
intellectual disability are potential candidates for sterilisation because they are
potentially at risk of pregnancy.
There are no figures to substantiate fear of pregnancy in this population. Figures from
the Office of the Public Advocate in Victoria record that in the adult guardianship
jurisdiction between 1987 and 1994, only 20 cases (approximately) involved applications
for authorisation of termination of pregnancy, and only 15 cases (approximately) raised
issues of child protection, adoption or foster care regarding the children of women with
intellectual disability.107
These figures do not demonstrate a huge problem and caution against sterilisation on the
basis of risk of pregnancy. This contextual backdrop illustrates the socio-political nature
of issues relating to the sterilisation of young women with intellectual disabilities.108
Finally and interestingly, the Full Bench of the Family Court in PvP took what appears at
face value to be a progressive position on the child's right to future sexual activity saying
"..that she should not be deprived of such an experience and that to do so would be to
discriminate against her because of her disability".109
For various reasons pregnancy was thought not to be an option. What is interesting is
104
Dr N. Lennox, Developmental Disability Unit, Medical School, University of Queensland, in a personal
communication reported that an international literature search identified only 16 cases of pregnancy in
women with Down’s Syndrome.
105
ABS population data No.3201.0 released January 1995, and ABS Welfare Section unpublished data
sourced 30 June 1995. It is essential that the figures are recognised as only those people within households
and does not represent those people living in institutional or hospital settings. The population as of 30 June
1994 was 17,843,300. The proportion of males at 49.8%. The proportion of females under 18 years is
assessed at approximately 25% of the total being 2,238,200. A survey by ABS was conducted listing 17
criteria to distinguish disability, and a single criteria slow learning which can constitute developmental
delay was screened. It was conceded that this criteria would only identify about 50% of the intellectually
disabled population in this group. The national total of people categorised as slow learners was 139,900 of
which approximately half or 61,500 are female. Crudely this constitutes approximately 19,800 females
under 18 years.
106
Xingyan Wen (1997) The Definition and Prevalence of Intellectual Disability in Australia, AIHW Cat.
No.DIS2, Canberra; Fryers, J. (1993). Epidemiological thinking in mental retardation : Issues in taxonomy
and population frequency. International Review of Research in Mental Retardation, 19, 97-133.
107
Figures from the Office of the Public Advocate from 1987 to 1994 note 132 sterilisation applications, 20
termination applications and 40 cases involving protective services and foster care/adoption issues. Note
that application rates do not indicate rates of consent to these matters. The cases include women with a
range of statutory disabilities like mental illness, head injury and acquired brain damage, they are not cases
exclusively related to women with intellectual disabilities. Many of the applications for sterilisation will
also represent women who are beyond child-bearing age and the primary issue is needed gynaecological
medical treatment for disease or malfunction.
108
Committee on Bioethics, 1990; Hart, D S. (1978). A National Sterilisation Policy: No Consensus,
Especially for the Mentally Incompetent. Family Planning/Population Reporter, 7(3), 45-49
109
P V P (1994) 19 Fam LR 1 at 23
that the Court nowhere appeared to have considered the detriment, if any, to sexual
pleasure which may have resulted from the removal of her uterus. A growing body of
research suggests that the uterus and cervix play an important part in sexual
satisfaction.110 In terms of an increased quality of life for the young woman by way of
avoiding pregnancy the penalty may be a reduced enjoyment of sexual experience.

finally, the reasons commonly given in support of the sterilisation of girls with
intellectual disability fail to take into account possibly adverse long term health
effects
They imply that hysterectomy has minimal adverse consequences. They assume both
medically and socially that the uterus has no function other than reproduction, that the
removal of the uterus of someone who is physically immature has none, little or only
transitory impact on her quality of life moving into adulthood, that it will not have a
significantly negative impact on her long term health and well-being, and that the risks
associated with the surgery itself are minimal. 111
There are differences of opinion regarding whether or not hysterectomy carries with it
significant long term health risks. Carlson notes that: “Within the international medical
literature, several research articles suggest possible long term effects of hysterectomy on
pre-menopausal women. These include early menopause with hormone deficiency
effects; and increased risk of cardio-vascular disease possibly related to prostaglandin
deficiencies. Prostaglandin is produced in the endometrium (lining of the
uterus)…..Although the retention of ovaries in the hysterectomy-only cases is said to
ensure normal hormonal production, this appears to be an assumption, rather than
established fact. No research has been identified which investigates the long term effects
of hysterectomy (or ovariectomy, endometrial ablation, tubal ligation), on young women
over a long period of time.”112
110
Dennerstein, L., Gotts, G., Brown, J., Morse, C., Farley, T., & Pinol, A. (1994). The relationship
between the menstrual cycle and female sexual interest. Psychoneuroendocrinlogy, 19(3), 293-304;
Dennestein, 1978; Zussman,L (1991). Sexual response after hysterectomy-oophorectomy : recent studies
and reconsideration of psychogenesis. American Journal of Obstetrics and Gynaecology, 40(7), 725-729;
Dennerstein (1995) at p.6 says that contractions of the uterus may contribute to female experiences of
orgasm, the cervix produces lubricative mucus especially apparent prior to ovulation and associated with
increased interest in sex and less friction (painful sex) during intercourse.
111
A broad range of readings which examine the issues of sterilisation from varying perspectives; Zussman,
L. 1991; Carlson, 1994; Committee on Bioethics, 1990; Family Law Council, 1993; Dennestein, L, 1978;
Elkins, 1985; Family Education Unit Inc, 1989; Grover, 1997c; Guthrie, 1986; Hamre-Neitupski, 1977;
Hart, 1978; Hufnagel, V., (1988). No more hysterectomies. Wellingborough, England: Thorston Publishers;
Kaur, 1995; Logue, 1988; Melita, 1992; Queensland Department of Families Youth and Community Care,
1995; Office of Intellectual Disability Services, 1990; Quinn, A., Barrett, T., Kingdom, J., & Murray, G.
(1994). Relationship between hysterectomy and subsequent ovarian function in a district hospital
population. J Obstet Gynaecol, 14, 103-107; Siddle, 1987.
112
Carlson 1994 at page 12. Research has indicated the potential for increased morbidity rates in women
who have had hysterectomies . Wood and Dennestein (1995) suggest that there may well be significant and
long term health damage associated with removal of the uterus.
Summary
Disease of the reproductive tract is a very rare occurrence in girls, and no less rare in girls
with intellectual disability. Surgical intervention in the absence of disease is difficult to
justify on clinical and medical grounds. (See Appendix 3 for an enlightened statement of
principle and practice regarding the sterilisation of women with an intellectual disability).
It follows that sterilisation of girls with intellectual disability ‘as a [genuine] by product
of surgery appropriately carried out to treat some malfunction or disease’ is rare, and
should be no more common among girls with intellectual disability than it is among their
non-disabled peers.
Sterilisation for other non-therapeutic reasons is a response to disability, not clinical
medical need. It reflects persistent negative attitudes towards fertility, menstruation and
menstrual management in girls with intellectual disability.
Very considerable caution should be exercised before coming to the conclusions that
sterilisation in these circumstances is the option of ‘last resort’ and ‘in the child’s best
interests.’
Heightened accountability in decision making about the child’s best interests requires a
coordinated, experienced and multi-disciplinary approach. Serious attention should be
given to the array of services and supports which may significantly enhance both the
child’s quality of life and that of her parents, siblings and carers. Sterilisation is not a
solution for the scarcity of family supports and resources.
4. The numbers of sterilisations of children which have been authorised by
courts and tribunals
The law which applies in all Australian states and territories was established by the High
Court in Marion’s Case in 1992. In summary,113 it is that:

court or tribunal authorisation is required for any sterilisation procedure carried out
on a child except for those which are “appropriately carried out to treat some
malfunction or disease”; and

the court or tribunal can give its authorisation if and only if sterilisation “is in the
child’s best interests” after “alternative and less invasive procedures have all failed or
it is certain that no other procedure or treatment will work.”

the Family Court of Australia has jurisdiction in all states and territories, but
concurrent jurisdiction is exercised:

in South Australia by the Guardianship Board; and

in New South Wales by the Guardianship Board in the case of 16 and 17 year
olds, and the Supreme Court in the case of children under 16;

in those states, sterilisation of children, therapeutic or otherwise, was made
unlawful by legislation in 1977 and 1987 respectively unless authorised by the
relevant state court or tribunal; however the High Court found in PvP that the
legislation is invalid in so far as it is inconsistent with the law established in
Marion.
The court and tribunal data
Specific data has not been recorded certainly until recently, and each jurisdiction is
reluctant to be ‘quoted’ as to the exact numbers either of applications which have been
made for authorisation of sterilisation or of the authorisations which have been given.
The data which is available and which goes back to 1988 is regarded however as a
‘reliable approximation’. It is set out in Table 4.1.
It shows that since 1987 Australian courts and tribunals have authorised a total of 25
sterilisation procedures to be performed on children, including 17 since Marion’s Case in
1992.
113
For a more complete discussion, refer to chapter 2 above.
Table 4.1: The Number of Authorisations of Girls by Australian Courts and Tribunals, 1987 - 1997
Forum
Family
Court of
Australia
VIC
NSW(a)
WA
SA(b)
ACT
NT
QLD
TAS
Re: Jane 1988
Unreported 1993
Re: JW, 1995
Re: Teenager ’88
Re: Elisabeth ’89
Re: M, 1992
PvP 1994
Re:BW 1995
None known
None known
None known
Marion No2, ‘92
Re: S 1989
Unreported 1990
Re: Sarah 1993
Unreported 1994
None known
State
Supreme
Court
State
Guard'ship
Board
None known
JLS v JES,’96
None known
None known
None known
None known
None known
None known
Not applicable
Mar 1992
Nov 1995
Aug 1996
Not applicable
1988
1990
1990
1993
1993
Feb 1995
May 1995
Jun 1996#
(# quashed AAC)
Not applicable
Not applicable
Not applicable
TOTAL
3 [2]
9 [7]
1 [1]
5 [3]
-
7 [4]
-
TOTAL
14 [9]
1 [1]
10 [7]
-
25 [17]
The total number of sterilisations of girls authorised by Courts and Tribunals in Australia between 1987 and 1997 is 25. The youngest was 12 years old. Several of these involved children who had not begun to
menstruate.
The figures in brackets are the number of sterilisations which have been authorised since Marion’s Case in 1992 - a total of 17.
All jurisdictions and agencies involved in these matters are reluctant to be ‘quoted’ on the exact numbers of authorisations. They are clear, however, that the figures provided approximates the true figures.
(a)
In NSW, the Family Court exercises concurrent jurisdiction with the Supreme Court (children up to 16 years) and the Guardianship Board (16 and 17 year olds).
(b)
In SA, the Family Court exercises concurrent jurisdiction with the Guardianship Board
(i)



(ii)






114
in South Australia:
there have been 10 applications to the Guardianship Board, 7 of which were
authorised (the Board’s authorisation in an 8th case was overturned by the
Administrative Appeals Court on appeal);114
it appears that no more than 5 applications were received by the Guardianship
Board in the period between 1979 (when proclamation of the Mental Health Act
1977 made sterilisation of a child unlawful in South Australia unless authorised by
the Board) and Marion’s Case in 1992;115
the Board finds ‘menstrual management’ matters the most difficult, in particular
matters relating to ‘social, sanitary and other problems associated with
menstruation’; and its experience is “that such ‘problems’ are more often
problems for the carer or associates of the person with the disability.”116
in New South Wales:
according to a search117 by state, including unreported cases, there has been just
one matter heard in a state Supreme Court, in NSW in 1996 118
there have been 9 applications to the Guardianship Board in respect of 16 and 17
year olds, of which 3 were authorised 119(in one case authorisation was refused by
the Board but subsequently given when the matter was taken to the Family
Court)120;
it appears that no more than 6 applications were received by the Guardianship
Board in the period between 1989 (when proclamation of the Children [Care and
Protection] and Guardianship Acts 1987 made sterilisation of children unlawful in
New South Wales unless authorised by the Supreme court or the Board) and
Marion’s Case in 1992;
of the procedures authorised by the Board, 2 were for two hysterectomies with
retention of ovaries, and 1 for tubal clip sterilisation. That case (in 1992) was the
first authorisation given under the Guardianship Act 1988. The young woman
was sexually active and had cardio-vascular disease which precluded the use of
alternative contraceptive methods. The sterilisation was for permanent fertility
management and the board authorised the least restrictive option being tubal clip
sterilisation.121
there have been no authorisations given for bi-lateral oophorectomy or
endometrial ablation;
an analysis of the reasons why authorisations were sought found that “overall,
Personal communication with Community Education Officer of the (SA) Office of the Public
Advocate November 1997 and Annual Report 1995/96 of the (SA) Office of the Public Advocate at
page 25
115
Ibid.
116
Inter-Jurisdictional Committee on Guardianship and Financial Management for Adults with
Disabilities, Response to Family Law Council Discussion Paper - Sterilisation and other medical
procedures on Children, March 1994 at page 14.
117
CaseBase search, pink Ribbon Publishing Reed International Books t/a Butterworths, October
1997.
118
JLS v JES - SCNSW., (1996) 20 Fam LR 485 before Bryson J.
119
Personal communication from the Board’s Legal Officer, and the Board’s Registrar.
120
Re: BW -FamCT (NSW) unreported 10 April 1995.
121
Ford, J., 1996, The Sterilisation of Young Women with Intellectual Disability, Australian Journal of
Family Law, 10, P. 236.

contraception featured as the motivation or one of the motivations in 7 of the 8
cases [ up to February 1994]. Menstrual management featured as the motivation
or a motivation in 4 of these applications and ‘medical reasons’ featured as the
motivation or a motivation in 3 ….”122
interestingly, and in support of research in the area123, the information on these
files showed that only 4 of these 8 young women received some form of specific
sexuality, human relations, or menstrual management training or counselling prior
to the lodging of the application for sterilisation. The 4 young women who did
access support received their training from developmental disability services, with
2 of them also receiving support and education from their families and school
teachers. None of the young women had contact with the Family Planning
Association. 124
(iii)


in the Family Court of Australia:
there have been 15 applications to the Family Court, 14 of which have been
authorised (the exception was Re L and M125). There have been several further
applications in respect of other ‘special medical procedures’, including gender
reassignment126, disputed heart surgery127, and harvest of bone marrow128.
in the majority of cases the procedure the Family Court has authorised is
hysterectomy, however one included hysterectomy with bilateral
oophorectomy129, and another endometrial ablation with hysterectomy as a last
resort 130.
Summary
Since 1987, Australian courts and tribunals have authorised a total of 25 sterilisation
procedures to be performed on children, including 17 since Marion’s Case in 1992.
122
Inter-Jurisdictional Committee on Guardianship and Financial Management for Adults with
Disabilities, Response to Family Law Council Discussion Paper-Sterilisation and Other Medical
Procedures on Children, 1994, Attachment A - “Profile of the Guardianship Board cases regarding
Special medical Treatment - Sterilisation”.
123
Carlson, 1994 ; Family Education Unit Inc, 1989; Queensland Department of Families Youth and
Community Care, 1995.
124
Inter-Jurisdictional Committee, at page 226
125
Re L and M, (1993) 17 Fam LR 357 (known as Sarah's case)
126
Re A (a child) 1993 FLC 402, (known as Alanna’s Case).
127
Public Advocate v GP and KP, 1994, ML 8841/93. (known as Michaels’ Case)
128
GWW and CMW, FLC, HB 1447/96.
129
Marion’s Case (no. 2).
130
Re JW, heard by Brown J., Melbourne, 1995, unreported.
5. The numbers of sterilisations of children being performed in
Australian hospitals
The data is collected from a variety of sources, including the Health Insurance
Commission, the Australian Institute of Health and Welfare131, and two major
research projects relating to the sterilisation of children - Menstrual Management and
Fertility Management for Women who have Intellectual Disability and High Support
Needs : An Analysis of Australian Policy132 and the previously referred to report of the
Family Law Council.133
Irrespective of the source of the data, the following comments apply:

caution should be exercised in its analysis and interpretation. There may have
been changes since data collection began in 1987 to the ways in which procedures
are identified and coded for data collection purposes;

other deficiencies, including inconsistencies between categorical data and totals
are evident, indicating problems with its quality;134
it does not identify the conditions which led to the procedures being performed, or
the purpose for the procedure. There is no listed indication whether the procedure
was carried out to treat disease (eg cancer), to manage fertility and contraception,
or to eliminate menstruation for ‘menstrual management’ reasons;


it does not identify whether the child or young woman on whom the procedure
was performed has an intellectual, physical or sensory disability;

it is counted by numbers of recorded procedures per financial year.
The Health Insurance Commission (HIC) data
The HIC is a Commonwealth statutory authority under the Health Insurance
Commission Act 1973. Its function is to:

administer the Australian national health insurance program;

operate the private health insurance fund Medibank private; and

administer the payment of benefits under the government’s medicare program,
PBS schemes and Childcare Cash Rebate Scheme135.
131
Australian Institute of Health and Welfare. (1997). Australian Hospital Statistics 1995-96 (Health
Services Series cat.no.HSE 3 no.10). Canberra: AIHW.
132
Carlson, G., Taylor, M., Wilson, J., & Griffin, J. (1994). Menstrual Management and Fertility
Management for Women who have Intellectual Disability and High Support Needs : An Analysis of
Australian Policy (2nd edition). Queensland: Department of Social Work and Social Policy, University
of Queensland.
133
Family Law Council, (1993) Discussion Paper on Sterilisation and Other Medical Procedures on
Children, Canberra.
134
AIHW, ibid., at P.3.
135
Hospital and Health Services Year 1997, Kompass Australia, Victoria. P.57
The HIC data:

identifies only those procedures which qualify for a medicare benefit and for
which a medicare claim has been processed; and

includes services provided to private patients in public hospitals and uninsured
patients in private hospitals; and

excludes services provided by hospital doctors to public patients in public
hospitals.
For these reasons the HIC data may well represent a significant underestimate of the
total numbers of sterilisation procedures carried out in all hospitals. Furthermore,
there is persistent anecdotal evidence including off the record comments by medical
practitioners, other service providers and family members that sterilisation procedures
are sometimes listed, for example, as appendectomies, and are therefore not
included.136
Additionally, the HIC data:

is sourced for the 1987-94 years from the two research reports mentioned above;

covers different age ranges in the different sources of information. The age range
varies from 0-19 years in An Analysis of Australian Policy , 0-20 years in the
report of the Family Law Council, and 0-17 years in the 1995-97 figures;

in respect of the years 1995-97 is not necessarily representative of all sterilisation
procedures but is limited to specified item numbers for hysterectomy, tubal
ligation, and endometrial ablation;

does not (in any year) include laparoscopic sterilisations;

has only included numbers on endometrial ablation since 1992. Endometrial
ablation is a relatively new procedure;

does not distinguish between the removal of one ovary, which is not a sterilisation
procedure, and the removal of both ovaries (bi-lateral oophorectomy), which is.
For this reason ovarian procedures are not counted as sterilisation procedures,
though they include an unknown number (of bi-lateral oophorectomies) which
are.137 This is another reason why the given numbers of sterilisations may be
underestimates.
136
Personal communication with disability advocacy groups.
The removal of both ovaries (a sterilisation procedure) for the purposes of regulating cyclical
epilepsy and/or behaviour control has been a surgical response for young women with intellectual
disabilities. Marion’s case is an example. This approach to the management of behaviour and control
of cyclical epilepsy have come under increasing scrutiny and criticism. They are considered to have a
significantly negative impact upon female health and well-being in both the short and long term.(refer
to Chapter 3). The procedure has been called female castration.
137
The total number of sterilisation procedures performed on private patients aged 0-20
years is given in Table 5.1, and the number of ovarian procedures (including bi-lateral
oophorectomies) in Table 5.2.
The Tables show the following:

the figures for the 1995-96 and 1996-97 financial years show a marked variation
from previous years. It is likely that this reflects the way the procedures have
been identified and counted, and therefore does not necessarily represent the true
number of procedures undertaken (see Table 5.1);

the number of endometrial ablations is significant. In 1994 Carlson predicted that
“as hysterectomies decline in numbers, there may be an increase in endometrial
ablation or resection procedures” 138(see table 5.1);

there is an on-going trend in the use of ablations but they too are dropping in
numbers post 1995. It is interesting to note that there has been a marked and
consistent decrease in the number of ovarian procedures since 1987. Improved
technology may account for the decrease, or changes to the surgical preference for
these procedures (see Table 5.2).

the Northern Territory and Tasmania appear to have significantly higher rates for
ovarian type procedures per capita than other states except for Victoria (see Table
5.3). They do however have significantly lower rates for hysterectomy and tubal
ligation (see Table 5.4).
138
Carlson et al., 1994 at p. 29.
Table 5.1: Total of sterilisation procedures as private patients for females aged 0 - 20 years in Australia
Procedure
1987-88
1988-89
1989-90
1990-91
1991-92
1992-93
1993-94
1994-95
1995-96
1996-97
Hysterectomy
Tubal ligation
Endometrial
ablation
38
32
-
37
34
-
33
24
-
31
22
-
35
27
-
36
26
184
30
25
196
34
26
201
9
7
160
4
9
98
Source: Using Health Insurance Commission (HIC) data in Family Law Council (1993) “Sterilisation and other Medical Procedures on Children – A Discussion Paper” (0-20
years); and Carlson, G et al (1994) “Menstrual Management and Fertility Management for Women with Intellectual Disability and High Support Needs” (0-19 years) (2nd
ed), and for years 1995-97 HIC data on specified items for females up to and including 17 years only.
Table 5.2: Total of ovarian procedures as private patients for females aged 0 to 20 years in Australia
Procedure
Ovarian
Procedures
1987-88
462
1988-89
426
1989-90
334
1990-91
319
1991-92
261
1992-93
216
1993-94
196
1994-95
229
1995-96
117
1996-97
98
Source: Using Health Insurance Commission (HIC) data in Family Law Council (1993) “Sterilisation and other Medical Procedures on Children – A Discussion Paper” (0-20
years); and Carlson, G et al (1994) “Menstrual Management and Fertility Management for Women with Intellectual Disability and High Support Needs” (0-19 years) (2nd
ed), and for years 1995-97 HIC data on specified items for females up to and including 17 years only.
Table 5.3: Rates of ovarian procedures for females aged 0 to 19 years as private patients by State/Territory, 1993-94
New South
Victoria
Queensland
South Australia
Western
Tasmania
Northern
Australian
Wales
15.1
(a)
Australia
20.0
17.4
17.9
Rate per 100,000 females aged 0 to 19 years, as at 30 June 1994.
13.6
Territory
18.3
21.4
Capital
Territory
9.6
Table 5.4: Rates of sterilisation procedures for females aged 0 to 18 years, as private patients by State/Territory, 1993/94
State
Sterilisation procedures (b) (1)
New South Wales
Victoria
Queensland
South Australia
Western Australia
Tasmania
Northern Territory
Australian Capital Territory
Australia (a)
52
63
42
18
20
4
2
2
203
(a)
(b)
Population as at 30/6/94 females
aged 0-18 years
792,086
579,169
435,812
184,691
234,884
65,609
27,976
41,804
2,362,534
Rate (c) per 100,000
6.6
10.9
9.6
9.7
8.5
6.1
7.1
4.8
8.6
Includes other Territories (Christmas Island, Cocos (Keeling) Islands, Jervis Bay Territory).
Selected sterilisation procedures with Medical Benefits Scheme item numbers. Figures include only those services that qualify for medical benefits and do not
include services provided by hospital doctors to public patients in public hospitals, services as a result of compensation or insurance claims or services that qualify
for a benefit under the Veteran’s Affairs National Treatment Account.
(1)
These procedures include hysterectomy, endometrial ablation and tubal ligation only. Sources: Health Insurance Commission, Australian Bureau of Statistics
Catalogue No 3201.0
(c)
Rate of sterilisation procedures (not including laparoscopic sterilisation) per 100,000 of the female population aged 0 to 18 years as at 30 June 1994.
Note: The financial year 1993-94 has been used because it is the last year in which HIC data has been made available by age stratification, procedure and State.
In summary, the HIC data records that since 1987 there have been:

a total of 1358 sterilisations of children (by hysterectomy, tubal ligation and
endometrial ablation), including 1045 since Marion’s Case in 1992; and

a total of 2658 ovarian procedures (including bi-lateral oophorectomy), including
856 since Marion’s Case in 1992.
For the reasons given above these figures are very likely to be a significant under
estimate of the true numbers.
The Australian Institute of Health and Welfare (AIHW) data
The Australian Institute of Health and Welfare (AIHW) published a report in June
1997 on Australian hospital statistics which includes both public and private
hospitals.139
The report is it’s first publication presenting national data according to the reported
principal diagnosis and procedure for hospital admission and treatment.
It lists hysterectomy, tubal ligation, and ablations of the uterus as principal
procedures. The national Health Data Dictionary defines principal procedures as the
most significant procedure that was performed for the treatment of the principal
diagnosis. A principal procedure is defined as one that is surgical in nature, carries a
procedural risk, carries an anaesthetic risk, requires specialist training, and requires
special facilities or equipment only available in an acute hospital setting.
The AIHW data does not provide state by state breakdowns. It records140 that across
Australia during financial year 1995-96:

61 total abdominal hysterectomy and 37 vaginal hysterectomy procedures were
performed, a total of 98 hysterectomy procedures on patients in the 15-24 age
group;

565 tubal ligation procedures were performed on patients in the 15-24 age group;

1276 ‘procedures on ovaries’ were performed on patients in the 15-24 age group.
There is however no indication how many of these were bi-lateral oophorectomies
(and therefore sterilisation procedures).
It should be noted with the AIHW as with the HIC data that there is persistent
anecdotal evidence that some sterilisation procedures performed on girls may be being
disguised as other procedures (with appendectomy being recorded as the principal
procedure, for example). The prevalence of the practice is not known but if it is true
that it is occurring then the AIHW data, like the HIC data, will underestimate the true
numbers of sterilisations of girls.
139
Australian Institute of Health and Welfare, 1997, Australian Hospital Statistics 1995-96, AIHW
Catalogue no. HSE, Canberra.
140
Ibid., Table 6.18, P.104.
A comparison between the HIC and AIHW data
The difference between the AIHW and the HIC data is that the HIC data excludes
services provided by hospital doctors to public patients in public hospitals.
Comparing the two sets of data with this in mind suggests some tentative but
interesting conclusions. For example:

the AIHW data records 98 hysterectomies being performed on 15-24 year olds
during 1995/96. Assuming that the clinical indications do not vary significantly
between 15 and 24 year olds141, these figures suggest that approximately 37
hysterectomies were performed on 15 to 18 year olds. This compares with the
figure of 9 recorded in the HIC data for 1995/96 (see Table 5.1);

the AIHW data records 565 tubal ligations being performed on 15 to 24 year olds
during 1995/96, suggesting (on the same assumption, less safe in this instance142)
that approximately 226 were performed on 15 to 18 year olds, comparing with the
figure of 7 recorded in the HIC data for 1995/96 (see Table 5.1);

the AIHW data records 1276 ovarian procedures being performed on 15 to 24 year
olds during 1995/96, suggesting (on the same assumption) that approximately 524
were performed on 15 to 18 year olds, comparing with the 117 recorded in the
HIC data for 1995/96 (See Table 5.2).
While these comparisons are at best indicative, they warrant close examination and
suggest that:

the HIC data is as previously suggested a significant under-estimate of the true
numbers, perhaps by a factor of several times; and

sterilisation procedures are being performed in significant numbers on public
patients in public hospitals.
Commentary
The HIC data shows a significant variation in the rates of sterilisation of girls as
private patients across the states and territories (See Table 5.4). This invites the
interesting question of how the variation might be explained.
West has made the point that:
141
The assumption is that reproductive tract disease is not significantly more common in 18- 24 year
olds than it is in 15-17 year olds. They will be more likely to be having children and therefore to be at
risk of massive post partum bleeding requiring ‘obstetric hysterectomy,’ but this is rare - there are only
several cases a year across all age groups at Melbourne’s Royal Women’s Hospital out of
approximately 7,000 births.
142
The assumption is less safe here for the obvious reason that 18-24 year olds are more likely to be
sexually active, and to undergo tubal ligation for contraceptive purposes.
“geographical differences in the rate of hysterectomy strengthen the argument that
doctors, not disease, determine who end up on the operating table … the American
College of Obstetrics and Gynaecology concluded in 1979 (the last time the matter
was studied) that the disparities were due to ‘differences in the training of physicians,
the style of medical practice and the availability of gynaecologists and hospital beds
per capita’.”143
Caution must be exercised however in making any assumption that the state by state
disparities shown in the HIC data reflect disparities in the true numbers of
sterilisations of children state by state. The HIC data excludes sterilisations
performed by hospital doctors on public patients in public hospitals, and so could be
misleading. It is known, for example, that:




143
private hospitals provide approximately 25% of hospital beds in Australia, with
the percentages varying from state to state144;
approximately 20% of private hospital beds are occupied by uninsured patients,
with the percentages varying from state to state145;
approximately 10% of public hospital beds are occupied by private patients, with
the percentages varying from state to state146; and
private patients in public hospitals often receive preferential access to elective
surgery.147
West, S, The Hysterectomy Hoax, Doubleday, New York, 1994, at Pp 25-27.
See Table 5.6, below.
145
AIHW, ibid., Figure 9.2 at p139.
146
AIHW, ibid., Figure 9.1, at p138.
147
Grant, C and Lapsley, HM, The Australian Health Care System, School of Health Services
Management, University of NSW, 1993, at p182.
144
Table 5.5: Rates of type of surgeon by State/Territory, 3rd November 1997
Obstetrician
State
General
Paediatric
Population as Rate (1) per
and
Surgeon (1)
Surgeon (2)
at 30/6/94
100,000
Gynaecologist females aged
(3)
0-18
NSW
Victoria
Queensland
South
Australia
Western
Australia
Tasmania
Northern
Territory
ACT
Australia
Rate (2) per
100,000
Rate (3) per
100,000
559
462
234
143
34
25
10
7
1314
1417
589
510
792,086
579,169
435,812
184,691
70.6
79.8
53.7
77.4
4.3
4.3
2.3
3.8
165.9
244.7
135.2
276.1
109
10
429
234,884
46.4
4.3
182.6
31
9
3
0
102
86
65,609
27,976
47.2
32.2
4.6
0.0
155.5
307.4
18
1565
3
92
85
4532
41,804
2,362,534
43.1
66.2
7.2
3.9
203.3
191.8
Source: Professional Register of Royal Australasian College of Surgeons, and the Royal Australian College of Obstetricians and Gynaecologists.
Note: Surgeon types are identified on the basis of being a specialist discipline in sterilisation procedures. The registration data may include those retired and/or no longer
practicing. The numbers, however are indicative.
The health services picture is therefore very complex and due caution is required in
assigning trends, particularly state by state based upon the HIC data.
It may however be useful to compare state by state the variations in the rate of
sterilisation of children shown in the HIC data with the per capita numbers of
specialists most likely to be involved in sterilisation of girls (general surgery,
paediatric surgery, and obstetrics and gynaecology) - see Table 5.5; the rates of
private health insurance cover - see Table 5.6; the comparative numbers of private and
public hospital beds - see Table 5.6; and the total number of hospital beds per capita see table 5.6.
Given the earlier observation (in Chapter 3) about applications to courts and tribunals
for authorisation of sterilisation which have been successfully diverted after the
parents of the intellectually disabled girls concerned were introduced to support
services, it may be useful also to make a comparison with state by state spending on
services to people with disability and their families - see Table 5.7.
Table 5.6: Private health insurance, numbers of private and public hospital
beds and total bed numbers per capita by State
NSW
VIC
QLD SA
WA
TAS NT
ACT Aust
Private
Insurance
(1)
Private
Hospital
Beds(2)
Public
Hospital
Beds(2)
Total
Beds
Private
Beds as
% of
Total
Pop'n (3)
Total
beds per
capita
39.6
37.2
32.7
33.9
38.7
39.1
SA
NSW
37.2
6371
6429
4392
1900
2262
634
155
169
22312
20941
15915
12192
6188
5747
2103
609
897
64592
27312
22344
16584
8088
8089
2737
764
1066
86904
23.4
28.7
26.5
23.5
28.2
23.2
20.3
15.9
25.7
6152000
1 per 225
4521000
1 per 202
3316000
1 per 273
1476000
1 per 182
1746000
1 per 218
473000
1 per
173
177000
1 per 232
305000
1 per
286
18167000
1 per 209
Source:
(1)
Percentage of private health insurance per capita, Private Health Insurance
Administration Council, ACT, 1997.
(2)
Grant, C, and Lapsley, H M, 1993, Table 8.7 at page 190. These figures are
for 1991.
(3)
AIHW, Table A1 at page 144.
Table 5.7: Disability expenditure by State, 1993-94, (including aged and
disability services)
State
New South Wales
Victoria
1993-94 Actual per capita
105.10
140.31
Queensland
South Australia
Western Australia
Tasmania
Northern Territory
Australian Capital Territory
55.95
131.96
114.61
182.56
114.78
94.86
Source: Commonwealth Grants Commission (1997) Report on General Revenue Grant Relativities,
“Assessment of Standardised Revenues and Expenditures”, Table G-13 at p.241.
The comparisons show that:

there is an interesting but incomplete correlation between the rates of sterilisation
of girls as private patients and the per capita numbers of obstetricians and
gynaecologists. Of all the states, Victoria and SA have the highest rates of
sterilisation and the highest per capita numbers of obstetricians and
gynaecologists; Tasmania and NSW the lowest rates of sterilisation and the
second and third lowest per capita numbers of obstetricians and gynaecologists;
and WA a slightly lower than average rate of sterilisation and a slightly lower than
average per capita number of obstetricians and gynaecologists. The odd state out
is Queensland which has a comparatively high rate of sterilisation but the lowest
per capita number of obstetricians and gynaecologists.

there is no apparent correlation between the rates of sterilisation of girls as private
patients and rates of private health insurance cover. NSW and Tasmania both
have comparatively high rates of private insurance cover but comparatively low
rates of sterilisation, while Queensland and SA both have comparatively low rates
of private insurance cover but comparatively high rates of sterilisation.

there is some correlation between the rates of sterilisation of girls as private
patients and the relative numbers of private as opposed to public hospital beds.
NSW, Tasmania and the ACT each have comparatively low rates of sterilisation
and a comparatively low percentage of private hospital beds, while Victoria and
Queensland both have comparatively high rates of sterilisation and comparatively
high percentages of private hospital beds (though only slightly in Queensland’s
case). However WA has a slightly lower rate of sterilisation and a comparatively
high percentage of private hospital beds, and SA has a comparatively high rate of
sterilisation and a comparatively low percentage of private hospital beds.

there is no apparent correlation between rates of sterilisation of girls as private
patients and the total hospital bed numbers per capita. Victoria and SA both have
comparatively high rates of sterilisation and comparatively high bed numbers, and
NSW has comparatively low rates of sterilisation and comparatively low bed
numbers. However, Tasmania has a comparatively low rates of sterilisation and
comparatively high bed numbers, and Queensland has comparatively high rates of
sterilisation and comparatively low bed numbers.

there is no apparent correlation between rates of sterilisation of girls as private
patients and spending on services to people with disability. Queensland has a
comparatively high rate of sterilisation and comparatively low spending on
disability services. However Victoria and SA both have comparatively high rates
of sterilisation and comparatively high spending, Tasmania has a comparatively
low rate of sterilisation and comparatively high spending, and NSW has
comparatively low rates of sterilisation and comparatively low spending.
Summary
Since 1987 at least 1358 girls have been sterilised, 1045 of them since Marion’s Case
in 1992. This figure is a significant underestimate, perhaps by a factor of several
times. It represents only those sterilisations for which a medicare claim has been
processed.
It excludes sterilisations carried out other than by hysterectomy, tubal ligation and
endometrial ablation.
It excludes what are in all likelihood significant numbers of sterilisations carried out
by hospital doctors on girls who were public patients in public hospitals.
It appears on the HIC data that there is significant variation across states in the rates at
which children are sterilised, and that none of the usual health services indicators
which can illustrate variations apply. The state by state profiles are very complex and
require further examination.
6. Summary
The legal framework regulating sterilisation of children in Australia was set out by the
High Court in Marion’s Case in 1992. It sought to ensure heightened accountability
in decision making in an area where children are at significant risk of grave abuse of
their fundamental human right to bodily integrity. It held that:

court or tribunal authority is required before any child can lawfully be sterilised
unless the sterilisation occurs as a by-product of surgery appropriately carried out
to treat some malfunction or disease; and

authorisation may be given only if sterilisation is in the child’s best interests after
alternative and less invasive procedures have all failed or it is certain that no other
procedure or treatment will work.
Courts and tribunals have authorised a total of 17 sterilisations of girls since Marion’s
Case. Meanwhile, data collated by the Health Insurance Commission shows that at
least 1045 girls have been sterilised over this same period, and this figure counts only
those sterilisations which qualify for a medicare benefit and for which a claim has
been processed. It excludes sterilisations carried out by hospital doctors on public
patients in public hospitals. Comparisons with other data sources suggest that the true
number is much greater, perhaps by a factor of several times.
The law has failed to ensure these children the heightened accountability they are
owed, and without any doubt most were sterilised unlawfully. The facts are clear:

disease of the reproductive tract is a very rare occurrence in girls, and no less rare
in girls with intellectual disability. It follows that very few of these girls were
sterilised genuinely ‘as a by product of surgery appropriately carried out to treat
some malfunction or disease.’ The sterilisations of the vast majority were
unlawful because they were not authorised by a court or tribunal;

sterilisation in the absence of malfunction or disease may sometimes be the option
of genuine last resort, but this too is a rare occurrence. There are almost always
less invasive alternatives of both medical and non-medical kinds, and they work
with few exceptions. The sterilisations of the vast majority were unlawful because
without any doubt alternative and less invasive options had not been exhausted.
The law has failed to protect significant numbers of children from significant abuse of
their fundamental human right to bodily integrity. Worse, the community has aided
and abetted that abuse by funding it - all the 1045 sterilisations which are identified
can be identified only because they were ‘services which qualify for medicare
benefit,’ and the many more, perhaps several times more, are in the main ‘services
provided by hospital doctors to public patients in public hospitals.’
How can this be?

It is possible that there is widespread ignorance of the law within the medical
community, but not likely. Key professional bodies such as the Australian Medical
Association, the Royal Australian College of Obstetricians and Gynaecologists,
the Australian College of Paediatrics, and others all made submissions to major
law reform inquiries including that of the Family Law Council and the Law
Reform Commission of Western Australia. The issue has been debated
extensively in medico-legal forums.
Furthermore, the issue of sterilisation of children has received extensive coverage in
the mass media including documentaries and discussions on television and radio. The
print media has carried regular feature articles and news items in every State (a
representative sample is listed in Appendix 1) for well over a decade.

It is possible that the law is insufficiently clear. Both the Family Law Council and
the Law Reform Commission of Western Australia have argued that the
distinction between therapeutic and non-therapeutic sterilisations is too uncertain a
test of which matters require court authorisation. They have both argued also that
the best interests test needs to be spelt out to give decision makers guidance in its
application. However, ethical professional practice and simple prudence can of
themselves ensure the heightened accountability the High Court sought to achieve
through these tests.
Court or tribunal determination of whether any proposed sterilisation is lawful and in
a girl’s best interests can be assured simply by medical practitioners and hospital
administrators making sure that none but indisputably therapeutic procedures are
performed without court or tribunal authorisation. Legislative reform is urgent and
over due if medical professionals can’t or won’t address these issues themselves
through self regulatory frameworks specifying ethical and professional best practice
(for an example see Appendix 3).

It is possible also that the law is being deliberately flouted, motivated in particular
by the financial burdens on families of the requirement to seek court authorisation.
There is anecdotal evidence to this effect. The High Court itself drew attention to
this issue in Marion’s Case when it urged legislative reform for this reason. It is
without doubt a significant disincentive to achieving heightened accountability in
decision making about the sterilisation of children.
These matters require urgent attention in the best interests of significant numbers of
children whose human rights have been and continue to be abused in fundamental
ways. The issue of law reform has been on the agenda of the Standing Committee of
Attorneys General since Marion. It requires only the political will to bring it to
conclusion.
Appendix 1: Various newspaper articles on sterilisation
AAP. (1997, Sunday 9th February). Doc's rules to protect kids. Sunday Mail, p. 2.
Campbell, R. (1994, 4th May). Judge rejects a plan to sterilise disabled girl. Canberra
Times, p. 3.
Carter, H. (1997, 15th April). Disabled girls illegally sterilised. The Advertiser, p. 3.
Carter, H. (1997, 15 April). Secret Sterile fate for girls. Herald Sun. pp. 1 and 2.
Cassidy, A. (1996, 10th July). Girls being sterilised - researcher. Perth Daily.
Clack, PA. (1997, 17th April). disabled girls are sterilised report. Canberra Times, p.
4.
Cooper, C. (1996, 7th July). A mother's moral dilemma. South Australian, front page.
Editor, (1997, 17th February). Parents tire waiting for help. Courier Mail, p. 12.
Farouque, F. (1997, 16th April). State to investigate sterilisation claim. The Age, p. 3.
Hammond, P. (1993, 8th May). Handicapped girls under nine illegally sterilised.
Courier Mail.
Hastings, E. (1996, 24th April). Pushing the door open on disability. The Age, p 15.
Horin, A. (1994, 20th December). Disabled girl can be sterilised, says the court. The
Sydney Morning Herald, p. 5.
Innes, P. (1990, 7th December). Judges split on parent's right to decide on
sterilisation. The Age.
Innes, P. (1992, 29th May). Courts in future will have the final say on sterilisation of
minors. The Age, p. 13.
Koch, T. (1997, Saturday 8th February). Doctors flout sterilisation law. The Courier
Mail. p.4
Koch, T. (1997, 12th February). Inquiry into woman's sterilisation. The Courier Mail,
pp. 1.
Koch, T. (1997, 13th February). Police seek details of sterilisation of girl 12. The
Courier Mail, p. 5.
Lovell, D. (1994, 8th July). Call for tighter controls. The Weekend Independent, p. 12.
Lovell, D. (1994, 8th July). A decision for the parents, mother insists. The Weekend
Independent, p. 13.
Lovell, D. (1994, 8th July). Sterilisation..in her best interest? The Weekend
Independent.
Laws, J. (1996, 13th August). Sterilisation is the kind option. The Sunday Telegraph.
Meryment, E. (1996, 9th July). Disabled Tots 'made sterile'. The Courier Mail, p. 3.
Papadopoulos, N. (1996, 22nd June). Judge agrees to hysterectomy for retarded girl.
The Sydney Morning Herald, p. 2.
Parker, P. S. (1997, 18th February). Child comes before carers. The Courier Mail.
Pirrie, M. (1993, 7th July). Family law 1st world congress - Court fails disabled on
sterilisation. The Herald Sun, p. 9.
Pitt, H. (1988, 23rd December). Court at odds over who has right to decide for the
disabled. The Sydney Morning Herald.
Ruddy, B. (1989, 19th July). Court set to rule on girl's sex op. The Courier Mail, p.
13.
Skene, L. (1992, 14th May). When a child needs to be sterilised. The Age, p. 12.
Smith, D. (1996, 8th July). Hundreds of Disabled Girls are Illegally Sterilised:
Researcher. The Sydney Morning Herald, front page.
Smith, D. (1996, 8th July). Sterilisation; a case for and against. The Sydney Morning
Herald.
Smith, D. (1996, 8th July). What Price A Womb? The Sydney Morning Herald.
Solomon, D. (1992, 7th May). Judges limit sterilisation of children. The Australian, p.
3.
Stone, D. (1992, 10th May). Sterilisation decision now up to a judge. The Sunday
Age, p. 9.
Sweet, M. (1997, 16th April). Court warns doctors on illegal sterilisation. The Sydney
Morning Herald, p. 1.
syndicated. (1992, 7th May). No sterilisation without court approval. The Canberra
Times, p. 5.
syndicated. (1992, 16th May). WEL wants sterilisation law updated. The Cairns Post,
p. 15.
syndicated. (1994, 21st April). Bid to sterilise girl approved. The West Australian, p.
7.
syndicated. (1997, 16th April). Hundreds sterilised unlawfully. The Age, p. 9.
syndicated. (1997, 16 April). Probe urged on sterilising girls. The Courier Mail, p. 8.
syndicated, (1997, 16th April). Sterilisation of intellectually disabled girls 'flout the
law'. The Queensland Times, p. 17.
Appendix 2: Rates of reproductive cancers in young females
The AIHW data examines hospital admissions for principal and diagnosed conditions
for reproductive tract cancers in the total female population. It does not provide age
breakdowns. It records that the national rate:



for cancer of the cervix uteri is 0.1 per 1000 population;
for cancer of the uterus is 0.1 per 1000 population; and
for other cancers of the genital organs (not specified) is 0.2 per 1000
population.148
The rates for children and young women would be expected to be lower given that
cancer and disease of the reproductive tract is exceedingly rare in this population.
The incidence of procedures on ovaries which relate to disease like cancer are
exceedingly rare, however cysts on or torsion of the ovaries is not as rare in this
population. In this context it is interesting to note also the marked drop in the number
of procedures on the ovaries recorded in the HIC data (See Table 5.2).
The numbers of procedures on ovaries recorded in the HIC and AIHW data is of
concern even though there has been over recent years a marked decrease in this age
group.
The incidence of ovarian cancer in Victoria in 1994 in less than 20 year olds was a
total of 3. Ovarian cancer in this age group is of the type that usually does not require
bi-lateral oophorectomy as it tends to respond well to chemotherapy. As noted in
chapter 3 one or both ovaries are not removed if they fail as a result of chemotherapy.
The rate of cervical cancer in the age group 20-24 years in Victoria in 1994 was 6
cases. These cases would be likely to have the procedure of radical hysterectomy.
The cumulative rate for cancer of the endometrium (lining of the uterus) is 1.5 per
100,000 of the population. the rate would be expected to be exceedingly low in the 020 years age group.
Rates of cancer across States is not expected to be different in ways other than related
to demographic differences such as age distribution (ie; the older the population the
higher the incidence of cancer rates).
Source; Canstat (1997) Cancer in Victoria 1994, Anti- Cancer Council, Victoria,
Canstat No. 25.
148
Australian Institute of Health and Welfare, (1997) Australian Hospital Statistics 1995-96, AIHW
Catalogue No. HSE, Canberra, see Table 5.9 at p.56
Appendix 3: Source: Paediatrics Vol. 85 No. 5 May 1990 Page 868
American Academy of Paediatrics
Sterilisation of Women Who Are Mentally Handicapped
The Committee of Bioethics endorsed the American College of Obstetricians and
Gynaecologists statement of principle and practice on the sterilisation of mentally
handicapped women. The American Academy of Paediatrics reinforced and reiterated
the following principles:
With rare exception, there is no indication for sterilisation of a child before menarche.
An example is when sterilisation is not intended, but is an unavoidable consequence
of other surgery, such as surgery for a malignancy.
The primary or contributing indications for sterilisation (particularly surgical
sterilisation) based on presumed or anticipated hardships to others must be viewed
with great reservation and in light of acceptable alternate care arrangements which
might be made for the mentally retarded individual. The judgement of “hardship” is
extremely subjective and must not be simply a matter of inconvenience or a
preference for the easier of two alternatives.
When sterilisation or pharmacological control of menses is chosen after the
appropriate informed deliberations and attempts at obtaining consent, the
paediatrician should always advocate the least permanent and intrusive methodology
consistent with lowest risk for the patient. Present and future research and clinical
trials may very well make newer forms of chemical contraception or pharmacological
amenorrhoea preferable to surgical sterilisation.
Even if satisfactory informed consent cannot be provided by the patient, all efforts
must be made to communicate the procedure and intent of the planned intervention of
the patient; estimations of the patient’s ability to comprehend and participate in the
decision-making process should be done by personnel who are familiar with the
individual patient and whoa re experienced in communication with persons with
diminished mental capacity. The individual’s capacity to participate in decisionmaking concerning sterilisation is determined both by the degree of overall mental
impairment and by the individual’s profile of specific capabilities. Persons with
serious impairment in some areas of mental function may still be able to participate in
decisions affecting their reproduction.
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