April 2000
Welcome
to the new look of our AIS Support Group Newsletter.
This edition includes plans that will share the workload of the running our
group, and enable the support group to grow into a proactive group for the
benefit of people with AIS.
We have some of the world’s best medical practitioners in AIS here in
Australia, and as we know first-hand what we need from them, we should utilize
our relationship with them to the advantage of AIS people everywhere.
Our focus however, will continue to be for Australian people with AIS and
their families and loved ones.
I would like to invite all members to become more involved.
If you wish to write an article for this Newsletter, have an item you
would like addressed at the next support group meeting, or have any
suggestions or comments for our group please contact me.
(The contact details are on the bottom left side of this page).
Best
wishes,
Antoinette
Elisabeth Writes…..
Last
year, nineteen people met at the R.C.H. in Melbourne for our 5th AISSG meeting
since 1996. We spent the morning getting to know new members of the group
and renewing friendships with others, some travelling from interstate.
I was the oldest person there with our youngest member not two years
old!
We
were able to hear the views of parents for the first time, including
supportive family members and friends of those of us with an AIS condition,
after which it was felt that in the future, time should be given for group
discussion. The morning was spent
sharing personal thoughts and feelings, and we were grateful to Bev for
guiding us through the session so sensitively.
In preparation for the afternoon question time, we jotted down those concerns
we wished to have discussed with the medical panel.
Associate Professor Garry Warne, Associate Professor Jeffery Zajac, Dr.
Paddy Dewan, and Dr. Sonya Grover attended.
Apologies prior to the meeting were received from Dr. David Pereira and
Mrs Elizabeth Loughlan. Dr. Dewan talked about the factors that needed to be
considered by parents and doctors before making decisions on behalf of a child
born with an intersex condition. This
often included the social group that supported the family. Another topic of concern was osteoporosis and how best to
prevent it. Our thanks go to the
specialists who gave us much to think about.
As usual we ran out of time, and we plan to hold the next meeting over
a whole weekend.
Many
thanks also go to Mary in Queensland who has single-handedly been the key
contact person for AISSGA until last year.
Without her hard work, our group would not be where it is today, and we
hope that although she has asked for "time out", she will continue
to be a contact person for her State.
At
present we are in the process of re-organisation and a caretaker committee has
been set up to organise the group's affairs for the next twelve months, after
which the normal process of election should take place at a full meeting of
all members of the AISSGA. The committee feels that it would be good if it can be
arranged for other States to hold a meeting whenever possible as distances
make it financially impossible for some people to attend. There are tentative plans at present for a November meeting
in Melbourne this year, - more on that soon.
Our aim is to continue to provide information and support to AIS people
and their parents, and to provide the means by which they can keep in touch
with each other. To do this we
hope that we can have sub-groups in each State set up to link up with the
central group in Melbourne. Obviously this will take time and no doubt we
shall learn and make changes when necessary as we go. Confidentiality in all
matters remains paramount, as it has in the past.
I feel re-energised by the willingness of the new team and thank them for offering to give of their time to keep the group functioning, especially as we are losing Bev at the end of May. Bev has been my friend and mainstay for the past two years and it is wonderful that the work that she has put in for the group will continue. Thankyou Bev for all you have done for AISSG; for facilitating two meetings within a year with such wisdom and sensitivity. We shall miss you very much, but realise that your home in Canada beckons. We shall only say "Au Revoir"! With my new computer I can be in touch immediately - that is when I get the hang of it all!
On
the financial side I have to report that we have $249 in the kitty that will
be handed over to Antoinette who is our new Secretary/Treasurer.
This is the money that I have in the account after expenses for
postage; phone and meeting refreshments have been paid for.
This money will now go to start the Australian AISSG account.
The first newsletter will be out as soon as possible, so I had better see if I can manage to send this off to Antoinette without losing the whole lot!
CHEERS
Elisabeth
Petie
the possum.
I have a family of brush tail possums that
live in my roof. During the warmer months, they emerge into my back yard to do
the possummy things that possums do. I often sit in the back yard and watch
them, they having become so used to my intrusion that mostly they do not seem
to mind. Occasionally I will feed them, sometimes I can even get close enough
to them to pat one of them carefully. We respect each other’s space. I am
always careful not to get too close when one of them makes the little “I’m
a dangerous possum” noises that mean on that particular night, I am
intruding rather than being a guest. It is a wonderful experience to be able
to sit amongst them and the small price I have to pay, such as being woken up
by them during the night while they race around the roof, is worth it ten
times over.
One of the larger possums, whom I have
named Petie (no gender you will note!) for the purposes of discussion, seems
to be the more friendly of the family. The other night when I was in my back
yard, I noticed that Petie had an injured forepaw and seemed to be in some
pain because of it. Sure, Petie can still motor about the back yard pretty
quickly, but I have noticed some difficulty and awkwardness when Petie is
climbing and jumping.
What do possums have to do with AIS?. You
can possibly see where this is going and if I now introduce the word ‘intervention’,
you will make the obvious connection. I have started to worry about Petie and
such thoughts as wondering if my cat may have caused the injury, making me
indirectly responsible, are creeping into my head. What do I do, if anything,
about Petie’s injury. Is it my place to even make a decision? Do I put Petie
through the trauma of being caught in a cage and taken to the vet, because of
my concerns about quality of life? I cannot ask Petie, so any decision I make
will be my own and impact on Petie’s life. Many of you will now wish to
interject at this point and tell me that I have no right to interfere in Petie’s
life, you are probably right. Whether we like it or not though, it is human
nature to want to intervene where we perceive suffering or that some injustice
is being done.
In recent months, I have become more and
more concerned about the issues and pressures faced by parents of children
with intersex conditions. Although
I am particularly concerned about parents where a decision as to sex of
rearing has to be made and surgery becomes an issue, I am also becoming
increasingly concerned about the other decisions they have to make, such as
how much to disclose to a child about their condition, when to do it, how to
do it, etc. There seems to be disturbingly little in the way of advice
available to help them with many of these decisions. Is it unfair of me to
compare the decision with which I am faced about Petie the possum, with those
of parents of children with intersex conditions? The answer is yes; it is
unfair in the extreme. Although some would argue it is a simply a matter of
degree, realistically there is no comparison between the two situations other
than as an illustration. Petie is not my child and is therefore not a
reflection of my personality and interactions at the level displayed by
parents and their children. Any decision I make will not have anything like
the impact of decisions made by parents about their child’s upbringing.
This is far from being just a
philosophical discussion in my case though. I am looking at the decisions made
by parents from the point of view of someone with an intersex condition, for
whom medical intervention has earlier produced results that I am unhappy with.
It is with the knowledge that my parents were unaware not only of the true
nature of my condition, but also any subsequent impact on gender identity and
therefore the impact of any decision they would ultimately make, that has
allowed me to understand a little of just how difficult these issues are. I
had erroneously assumed that parents who were able to raise their children
with the full co-operation of the medical profession and with support from
others who have intersex conditions, would find decisions about their child
easier to make. I think is fair to say parents are in a better position to
make decisions where they have this support and are aware of the potential
outcomes, however, I do not believe it makes these decisions any easier for
them. With greater knowledge comes greater responsibility.
It is generally accepted that society is
built up of family units. The actual structure of these units is not as
important in my view as the interactions between those persons that make up
these units. Decisions made by members of these family units, will impact on
everyone that has to interact with the decision maker at some level. This
places additional responsibilities on the parents of any child, as any
decision they make will impact on their immediate environment as well.
Parents of children with any medical
condition, are also in the unenviable position of being “piggy in the middle”
between the medical profession and their child. Having to balance the needs of
their child against recommendations of the medical profession, whilst
considering their own feelings and parental instincts, is something no parent
should have to do.
Do I think we consider the needs of
parents of intersex children adequately?. No, I think we often fail to
understand just how difficult it is for them. I doubt even as adults with
intersex conditions, we will fully appreciate just what our parents have been
through when making the decisions they made that impacted upon the little
family unit in which we have lived. I have recently been able to discuss some
of my feelings with my mother (unfortunately my father died in 1980) and heard
her points of view about much that I have been and am now going through. To
appreciate just how much parents suffer for their children is a difficult, but
vital process for all of us.
At the beginning of this year, I had a
meeting with Garry Warne. Prior to the meeting, I asked for a “10 most
wanted” list from those I know with intersex conditions, of issues that
needed urgent attention if tangible progress was to be achieved in improving
the treatment of intersex conditions. Shorona, whom many of you will know,
sent me a message in which she suggested, amongst other issues, that formal
and thorough education of parents and their children was of paramount
importance. Many of the suggestions that I received were presented to Garry
Warne at that meeting for consideration by the medical profession. The issue
of education was again discussed at a meeting of members of the support group
and the medical profession at the Children’s Hospital in March. It has now
been suggested that the theme of this year’s support group meeting in
November should be education, both of parents and their children. Education
and support seem to be the only things that will really make any of the
decisions faced by parents of intersex children, any easier to make.
It is very easy to look to blame our
parents for decisions they have made that affected our lives as their
children. Parents also seem to have a knack for blaming themselves for things
they “did” to their children. Human nature seems to have provided us with
the innate temptation to focus on what we have done or suffered that is “wrong”,
when it is likely to be more beneficial to look at the decisions made that
were right. There will be times and circumstances when it will take a lot of
work and understanding to accept what I believe, and that is that parents have
as difficult a time making these decisions, as we as people with intersex
conditions have living with the consequences of these decisions.
As for Petie the possum, well, I’m off
to the vet. Judge me as you see fit.
For my mother and father.
"As
Nature Made Him:
The Boy Who Was Raised As A Girl".
Written by John Colapinto
Published: Harper Collins
RRP. $54 (Technical book and magazine Co, Melbourne)
A Review and Discussion.
For
most people, gender identity will never become an issue. For those of us that
have an intersex condition, or are the parents of a child with an intersex
condition, gender identity is something that will have been considered to
varying degrees at some stage in our lives. Many in our support group will
know of the work of psychologist John Money, and that of Professor Milton
Diamond, both considered experts in the field of psychosexual identity (gender
identity). Just how much of a person’s psychosexual identity results from
biological development and how much is a result of the environment in which
they are raised as a child (the “Nature versus Nurture” argument), is
still the subject of ongoing debate. What is now generally accepted, is that
each has a significant part to play, neither to the complete exclusion of the
other.
‘As Nature Made Him:’ describes in
detail perhaps the most famous of all cases dealing with psychosexual
identity. Far from being another medical text, clinical in approach and devoid
of emotional considerations, this book provides a very personal account of the
lives of a family deeply affected by tragedy of circumstance and the
controversy this eventually created.
John Money widely promoted
the argument that the predominant factor that dictated a person’s
psychosexual identity, was the environment in which they were raised. He
suggested that if intervention were early enough, a child could be raised
successfully as either a girl or boy. Much of his opinion was based on work he
had done ‘assigning’ a gender to intersex children. During the mid 1960’s,
he had the ideal opportunity to prove his theory presented to him. John and
Janet Reimer, were the parents of identical twin boys. During a circumcision
accident the penis of one of the boys, Bruce, was destroyed. The Reimers were
devastated and had no idea what they should do. After seeing Money promoting
his theory about psychosexual identity on television, they contacted him. They
later travelled to see him at his request and he suggested that Bruce could be
surgically re-assigned as a girl, and would be perfectly happy if raised that
way. Money’s suggestions were followed and Bruce became Brenda. It was seen
as the ideal test case as the twin brother, Brian, was raised as a boy and as
the two were twins, it was as ideal a control as was possible in such
circumstances. What followed was widely reported by Money in medical
literature as being a huge success, the reality being somewhat different.
Professor Milton Diamond,
had many doubts as to the likelihood of success of such an exercise as Money’s
twins case. He had extensively studied the effects of pre-natal hormone levels
in the development of psychosexual identity and suspected that it was not
possible to simply ‘train’ a person to accept a particular gender role. He
eventually managed to track down ‘Brenda’, now living as a male named
David and in his 30’s. Professor Diamond discovered that what John Money had
reported, was far from accurate. He published his findings in a paper titled
“Sex Reassignment at Birth: Long-term Review and Clinical Implications”,
co-authored by Keith Sigmundson. The reaction was immediate and controversial.
Amongst that which followed, was an article written by a journalist named John
Colapinto and published in Rolling Stone Magazine, in which the case was
referred to as the John/Joan case to protect David’s identity. The article
created considerable interest and John Colapinto approached David Reimer, to
ask if he would reveal his identity for the purpose of writing a book about
the case. David agreed.
‘As Nature Made Him:’
is made up of personal memories retold by David himself, as well as those of
twin brother Brian, his mother Janet, other family members and friends. The
book is a well-written and compelling account of the lives of David and his
family, revealing in detail many of the issues hidden away by medical
discussion of the case. It is a very difficult book to put down once you have
started to read it. ‘As Nature Made Him:’ will appeal to a wide readership
because the subject matter has been approached in a way that makes it easy to
understand. John Money’s work with intersex children and adults, is also
briefly described in this book.
As with all things, the
devil is in the detail. There are some issues that arise from “As Nature
Made Him:” and the way subject matter is described, that are of concern to
me personally and potentially to others with AIS. The principal issue to
remember about this book, is that it describes the circumstances of female
surgical assignment following an accident, of a child that was a
developmentally normal male. As such, there is no need for discussion in
Colapinto’s book about the effects of pre-natal hormonal influence on the
development of the foetus, other than to state that XY equals male. As
intersex cases and Money’s work with them are discussed in the book, there
is the possibility that this would lead to the impression that XY equals male
in AIS (or similar intersex conditions). I have no doubt that there is no
deliberate intention to create this impression, just that it would be
considered an unnecessary complication to explain the differences between
intersex cases and David’s case, given the story being related. The natural
conclusion to draw from the contents of the book is that those with AIS would
be pre-disposed to being female as pre-natal hormone levels feminise the
foetus. It is unfortunate that such a distinction is not made clear. There is
also the argument put forward, that intersex children are more flexible in
their psychosexual identity, and therefore able to be more easily “persuaded”
to accept either gender role. In my experience speaking to other adults with
AIS, there is no doubt as to gender identity and this was established and
known by them as children at quite an early age.
Another issue to bear in
mind is that Money did not provide any input into ‘As Nature Made Him:’.
Anyone who is familiar with Money’s work will have their own opinion of his
ideas, particularly those assigned a gender as a direct result. I have my own
opinion of him, but this is not the forum in which to discuss it. I also have
a friend whose opinion I respect greatly and whose cousin was treated by Money
when others would not help. She is quick to point out that Money is a
supporter of such things as honesty by the medical profession when dealing
with parents of intersex children and the children themselves, and educating
children in stages in language they can understand. I will leave it up to each
of you to form your own opinions of Money. Perhaps to form such an opinion
solely on the basis of ‘As Nature Made Him:’, is not to do justice to what
is a very complex issue.
Research on
sexual development at the Royal Children’s Hospital, Melbourne
Associate Professor Garry Warne
Senior Endocrinologist, RCH
Email: warneg@cryptic.rch.unimelb.edu.au
A number of research groups at RCH are
trying to understand the processes of sexual differentiation (the difference
between males and females) and sexual development (further development
occurring after sexual differentiation).
Dr Andrew Sinclair’s group has achieved
international recognition for discovering some of the most important genes
that control whether the gonad in the foetus becomes a testis or an ovary.
Their work compares the way the gonads develop in a variety of species,
including the American alligator! In this reptile, the temperature at which
the eggs incubate in the nest determines whether the baby alligator becomes a
male or a female. Just before Christmas, Dr Craig Smith in Dr Sinclair’s lab
published a paper in the prestigious journal, Nature, reporting the identification of a new gene called DMRT1,
which is needed for testis formation. Dr Smith is now screening XY female
patients with gonadal dysgenesis (failure of the gonads to develop into either
an ovary or a testis) to see how many have an altered DMRT1
gene.
Professor John Hutson, a paediatric
surgeon, is studying the descent of the testes and the role of a hormone
called Mullerian inhibitory substance (MIS), which is made by the foetal
testis and which causes the disappearance of the uterus and fallopian tubes in
males. We occasionally see boys whose testes did not make enough MIS, and they
have a uterus. Professor Hutson is also the surgeon who does most of the
genital surgery at RCH. He has greatly contributed to improving the results of
surgery for our patients and is regularly invited to speak at international
conferences and to demonstrate surgical techniques overseas.
Professor Jeffrey Zajac and I have been
studying the androgen receptor (AR) for many years.
The AR carries the androgen molecule into the nucleus of the target
cell and binds it to the DNA, so that it can stimulate the cell to make new
proteins. It is controlled by a gene on the X chromosome and alterations in
this gene cause AIS. Interestingly, a different kind of alteration in the AR
gene causes a completely different disease, called Kennedy’s disease, that
results in progressive muscular weakness. At the moment, our research is
trying to understand how the change in the AR gene causes the neurological
disease, and we are attempting the very difficult experiment of making a
transgenic animal model of this condition. This involves deliberately altering
the structure of the mouse AR gene and inserting it into a mouse egg. We also
have a clinical study on AIS, which is to examine bone density and fracture
risk in women with AIS. Dr Catherine Seymour, a physician from the Royal
Melbourne Hospital, is coordinating this study.
There is much research that needs to be
done and a group of us have been discussing what we would like to do.
Professor Julian Savulescu, Professor of Ethics in the Murdoch Children’s
Research Institute, has become very interested in the ethical aspects of
medical management for people born atypical with regard to their reproductive
system. In this important work, he will be seeking the help of as many
patients and former patients as possible. Dr Sonia Grover (Gynaecologist),
Elizabeth Loughlin (Social Worker), David Periera (Psychologist) and I are
very keen to carry out a long term outcome study of boys and girls treated at
RCH for genital disorders over the past few decades. I hope that the good
relations that have developed between our patients and the medical staff
through our support group network will facilitate such studies and that we can
collaborate with organizations such as the AISSG from the beginning of the
planning stages, to ensure that everyone’s point of view is considered and
respected. We acknowledge that for some patients, the outcome could have been
better and we want only the best for the new generation of children with
genital conditions.
Part of my work at RCH is as Program
Director of Royal Children’s Hospital International (RCHI). On behalf of the
Hospital, RCHI has negotiated sister hospital agreements with some very large
children’s hospitals in Asia (India, China, Singapore and Vietnam). We
therefore have an excellent opportunity to collaborate with our colleagues in
these countries on all of the research outlined above. This will allow
much-needed cross-cultural studies.
Bone Density Blues
Being
a young woman, I find having CAIS much more a blessing than a curse.
I don’t have the inconvenience of periods, I have a unique but quite
sexy, androgynous body shape with clear skin and I feel I don’t have to
conform to expected gender roles. It’s pretty cool. I
always assumed after my double orchidectomy (at age 17) that I would be able
to lead the life I want and apart from taking daily HRT I have lived without
considering my condition too greatly. But
I have found recently that certain aspects of CAIS, in particular bone
density, do require lifelong attention.
When I commenced Hormone Replacement
Therapy (immediately after my orchidectomy) I was always told by those who
treated me that the most important reason to pursue this long-term course of
medication was to maintain bone density. At the time this made sense to my Year 12 Biology brain –
you need estrogen to prevent osteoporosis – but was I fully aware?
The question I should have asked and gotten firm answers about HRT
eluded me. In particular, how do
I know I am taking the right dose of estrogen?
I found the response at the time I began treatment was “whatever
feels right”. It was all pretty
vague and I often felt as though I was just “told” what to take.
The attitude of the many practitioners I saw during this period of my
life turned me right off the advice of doctors and has led me to become
disgruntled with the industrial medical complex (boo hiss).
So I trundled away from the dudes with the degrees and managed my own
HRT over the last ten years.
The course of this treatment has taken a
few twists and turns. I have a
taken a regular does of oestradiol (Premarin 0.625 and sometimes transdermal
patches) since the time of my orchidectomy, but I have often thought that
there must be a healthier and more ethical way to take this dose.
My sister (who is also CAIS) and I acknowledge Premarin is a natural
estrogen but don’t like the fact that made from horse urine, which is
collected by dubious and even cruel methods.
My sister feels so strongly about this animal cruelty issue that she
hasn’t taken estrogen for a few years (more about this later).
I myself felt I could live with this – until something suitable came
along. With the recent popularity and rise in usage of
phytoestrogens for post-menopausal women I thought that perhaps here was be a
more conscientious alternative to those nasty red pills the pharmaceutical
giants are pushing on us via doctors more concerned with their pay packets
than their patients. I wanted to
learn more.
I
found a really nice naturopath who felt she could treat me.
Her prescription was phytoestrogenic herbs taken orally with other
herbs to help support my liver and hormone producing glands.
Before going onto this phytoestrogen treatment, just to be on the safe
side, I did something that was never suggested by any doctor treating me: I
had a bone densitometry scan. To
my surprise I found that I was about 80% of the average for women of my age
group (21-year-olds). This is
very low. I was determined to go on and try a natural phytoestrogen
course for 6 months and then get another scan.
At the end of this probationary 6-month period I had another scan and
found I my bone density had dropped another 8% - teetering precariously above
a level considered as oesteoporotic. I
was pretty freaked out to say the least.
So what does this all mean?
Obviously, the dose of phytoestrogens I was taking from my naturopath
was too low. But was I ever
getting enough? Did I have a low
bone density prior to my orchidectomy (I’ve learned that this is a problem
generally with AIS)? Or have I
been dropping at a steady yet alarming rate even when I was on regular HRT all
those years? In short, have I
ever taken the perfect dose of estrogen?
At the start of this year I was resolved
to find my “perfect dose”. I’ve
started going to a new endocrinologist. I don’t feel she’s as caring as my naturopath and is
definitely a part of the medical establishment I detest.
However, considering that I have my health to lose, my attitude is to
demand information and results. Nothing
personal, you know. The theory my
endocrinologist is presently going by is that if I am absorbing my estrogen
correctly (she’s done tests for this) then I need to up my dosage of
estrogen until I down bring my Luteinizing Follicle Hormone (LFH) level down
to a reasonable level. Hopefully
this will reveal a perfect dose that will halt my dropping bone density
levels.
After receiving my dramatic bone density
results my sister had her first bone densitometry last month.
She has osteoporosis. As I
said before, she has not taken conventional estrogen for some years.
Abandoning HRT all together is clearly not advisable.
Although naturopathic medicine has not
provided nearly enough estrogen to maintain my bone density, I can say that I
find that I now feel healthier and zippier than I have in ages!
Having an understanding and caring naturopath who looks at one’s
health holistically is also definitely a plus.
My naturopath and I often bounce ideas around and come up with good
questions to ask my endocrinologist…. Can
the most correct dose of estrogen for an individual be measured
scientifically? Should I have
been taking calcium supplements all this time and encouraged to live an
active, sporty life? Does
progesterone have a place in HRT therapy for maintaining a healthy done
density? Another positive aspect
of my bone density dilemmas is that it has led me to seek help from further
afield (and thus my initial contact with the Aussie chapter of the AIS support
group – yay J).
The quest to find out more info and my
perfect HRT dose goes on….
GIRES Medical Research Panel – Medical Management
Of Intersexed Infants
GIRES (Gender Identity Research and Education Society) is
working with UK medical bodies to develop agreed guidelines for the medical
management of intersexed infants that will deal with
the following factors:
1.
The impossibility of predicting or manipulating, with certainty, the eventual
gender identity of any infant, whether intersexed or not.
2.
The need to make an early decision on gender for social purposes does not
imply equal urgency for gender confirming treatment.
3.
The consequences of the various errors which may be made in undertaking
irreversible treatment of such infants.
4.
The need for a comprehensive multidisciplinary assessment of each case.
5.
The conditions for which immediate irreversible medical treatment is a
compelling necessity.
6.
The presumption that, except in cases of compelling medical urgency,
irreversible treatment will be delayed until the patient can give fully
informed consent.
7.
The safeguards to prevent avoidable damage to the patient's sexual functions.
8.
The information and advice which should be provided to the parents of such
infants, including how to contact the specialised support groups.
9.
The requirement for long term follow up of each case into adulthood.
The charity will be pleased to receive comments on the above-suggested
factors. Anyone may contact them
at
Gender
Identity Research & Education Society
Melverley, The Warren, Ashstead, Surrey, KT21 2SP
Tel: 01372-801554 - Fax: 01372-2722971
E-mail: bernardgi@aol.com
Web site: http://pfc.org.uk/gires/
Alternatively,
you may contact me (Antoinette), and I will be happy to pass your comments on.
Three
Recommendations from “Pediatric Ethics and the Surgical Assignment of Sex”
Printed here with the kind
permission of Prof. Milton Diamond.
Kenneth Kipnis, Ph.D.
Department of Philosophy
University of Hawai`i at Manoa
Honolulu, Hawai`i 96822
Milton Diamond, Ph.D.
Department of Anatomy and Reproductive Biology
Pacific Center for Sex and Society
The John A. Burns School of Medicine
University of Hawai`i at Manoa
Honolulu, Hawai`i 96822
FIRST RECOMMENDATION: That there be a general moratorium
on such surgery when it is done without the consent of the patient.
In arriving at this first recommendation, we do not appeal
to the premise that normalizing surgery in infancy does more harm than good.
As noted earlier, the large-scale studies that could confirm this have yet to
be done. While only a sceptical premise is warranted -- i.e., that we do not
now know that surgery does more good than harm -- it suffices nonetheless to
justify a moratorium.
As a firm rule, doctors should never undertake surgery,
especially without consent, unless there are disproportionate hazards
associated with all of the other options: Above all, do no harm. The
presumption has always to be against surgery unless two types of evidence are
at hand. First, one needs to know that comparable patients generally do well
after the surgery: such data are not at hand regarding the adult beneficiaries
of these surgeries. And second, one needs to know that comparable patients
generally do badly without the surgery. Since surgery is always harmful per
se, it should never be done unless there is an expectation of ample
compensating benefits. Because this evidence is lacking, the surgical
assignment of sex remains an experimental procedure: one in which the results
cannot be properly assessed until at least 20 years after the intervention.
Accordingly, it is not possible for a patient's parents to give informed
consent to these procedures precisely because the medical profession has not
systematically assessed what happens to the adults these infant patients
become. Doctors can't tell parents what the long-term risks and benefits are
because they haven't done the studies and don't know.
With the publication of the rest of the John/Joan story, and
the additional research sketched above, the standard of practice appears to
have lost the epistemic foundation it was earlier thought to have. And yet for
some reason these operations continue despite the erosion of their
justification. We recommend that all pediatric surgical assignments be
suspended until these issues are resolved.
Two caveats: We are not arguing that medically justified
surgical interventions be withheld. Many conditions -- bladder exstrophy,
certain types of CAH -- are associated with risks of morbidity, mortality and
loss of function. Such conditions should always be treated appropriately. And
second, we are not suggesting that intersexual children be raised without
gender. The choice of gender assignment should take into account the infant's
condition, including its causes, and whatever is known about the prognosis.
The aim must be to raise infants in a way that will most probably turn
out to be comfortable for the maturing child. But gender assignment has to be
provisional, subject to revision by the intersexual child as he or she
matures. Our objection is to the surgical assignment of sex, not to
gender assignment per se.
SECOND RECOMMENDATION: That this moratorium not be lifted unless and
until the medical profession completes comprehensive lookback studies and
finds that the outcomes of past interventions have been positive.
In part, this recommendation emerges from sympathy with the view that
early surgery may be medically indicated for some types of intersexuality. We
need to know more, for example, about the high incidence of cancer in cases of
mixed gonadal dysgenesis.
But a stronger justification flows from medical integrity:
the profession's ethical commitment to learn as much as it can, even when it
makes mistakes. Luckily, a
20-year double-blind prospective study is unnecessary. There are now many
thousands of grown intersexuals who have and who have not had surgical and
hormonal treatment. Retrospective outcome studies can now be done on these
adults, uncovering the comparative effects of treatment and nontreatment. The
willingness to subject its practices to honest scrutiny is part of what any
profession owes to the community it serves, part of what makes the profession
worthy of its community's trust. Pediatrics has an obligation to assess the mature products of
its handiwork.
Finally, these studies may be of significant benefit to
intersexuals themselves. If the studies find these patients to be at risk for
certain medical conditions, this information should be passed along so they
can plan and act accordingly.
THIRD RECOMMENDATION: That efforts be made to undo the effects of past
physician deception.
For years, pediatric surgeons have stressed the necessity of rearing
post-surgical intersexual infants as unambiguous boys or girls. We do not
question that. However, in implementing this approach, parents and clinicians
have often concealed aspects of surgery and treatment from the child and
excluded maturing children from medical management decisions. Joan Hampson,
one of Money's early co-authors, has remarked: "Oddly, even in children
old enough to have some opinion, in our experience it has been rare that they
have been given any opportunity to express it." This practice can take the form of a well-intentioned albeit
deceptive conspiracy between family and clinicians and against the child.
Taking the long view, one might ask when, if ever, these
former patients should be told of their medical histories. Should it be the
intention, at infancy, that these patients never be told or, rather, is the
mature or maturing patient entitled to know? There is no standard that the
pediatrician advise parents to disclose when their child reaches puberty or
adulthood or at any other time. Adults who have had these procedures in
childhood are now presenting at clinics quite ignorant of their history.
This secrecy does damage to the patient. For success in
deception entails that the adult patient not understand his or her medical
condition. Just to the extent that these adults are misled, they cannot act
rationally out of a realistic appraisal of their situation.
But a second objection proceeds from the observation that
these cultivated illusions cannot be nurtured reliably and indefinitely. Often
patients will discover their condition from an inadvertent family slip,
community gossip or personal investigation into puzzling aspects of their
lives. As these children mature into full adulthood and initiate independent
clinical relationships, the web of deception will weaken, at least to the
extent that the patient develops genuine relationships of trust and confidence
with doctors. Unless the entire profession is complicit (thereby ruling out
genuine relationships of trust and confidence), one must expect that the truth
will emerge. And when it does, the patient will learn anyway what she or he
was never supposed to have found out. (If the patient is going to find out
anyway, surely it is better for the physician to initiate disclosure.) Even
more disturbing than discovering the secret, the former patient will also
discover that his or her deformity is unspeakably shameful in the minds of
parents and physicians. Last, the former patient will learn that she or he has
since childhood been systematically deceived by the very people who should
have been the most trustworthy. These patients will often avoid physicians and
become estranged from their parents. All this is damaging. Most of it is
needless.
On a broader scale, it will not be only those patients who
learn that physicians are willing to participate in deception. It will be the
general community who come to know that doctors choreograph familial
mendacity: this is what the former patients are saying.
We recommend that the medical profession find ways to own up
to these adults, initiating disclosure of the medical histories doctors have
helped to conceal from their former pediatric patients. In addition to the
ethical obligation, clinicians may even have legal duties to warn their former
patients when matters of importance are discovered.
One final conjecture. It may well be that this lack of candor is at the root
of the profession's failure to do the needed outcome studies, the reason why
so many former patients are "lost to follow-up." For researchers
cannot easily question former patients on the effects of surgery done in
infancy when those same patients have never been informed of the surgery, let
alone the reasons for it. Although our recommendations are threefold, they
speak to a single complex problem. Parents cannot be informed of the expected
outcome of the pediatric surgery because the adult outcome studies have not
been done. And the adult outcome studies have not been done because these
adults have not been informed of the surgery. We may have here an epistemic
"black hole" that entraps parents, patients, and physicians in lies,
secrets, and avoidable ignorance. While it will take intellectual integrity
and professional courage for these pediatric practitioners to extricate
themselves, we expect the profession will rise to this occasion.
Psycho-Social/Gender
ID Study
Prof.
Milton Diamond in conjunction with the AIS SG have developed a questionnaire
for people affected by AIS in order to gather objective data on the condition
and its medical management. Please
contact him if you wish to participate in this study.
His contact details are:
Milton Diamond, Ph.D. Phone: (808) 956-7400
University of Hawaii - Manoa Fax: (808) 956-9481
John A. Burns School of Medicine E-mail: diamond@hawaii.edu
Pacific Center for Sex & Society 1951 East-West Rd.,
Dept. Anatomy & Reproductive Biology Honolulu, Hawaii, 96822 U.S.A.
E-mail: diamond@hawaii.edu
ISNA
PRESS RELEASE:
FEBRUARY
23, 2000
North American
Task Force On Intersex Formed
Seeks Broad Interdisciplinary Consensus On Treatment
CONTACT INFO
CHERYL CHASE, ISNA
(734) 994-7369 cchase@isna.org
IAN AARONSON, NATFI (843) 792-4531 perkos@musc.edu
The North American
Task Force on Intersex (NATFI) has been formed in response to the growing
debate over standards of practice for medical treatment of intersex children.
Until a few years ago, these standards were uncontroversial. Now, however, the
standards face criticism from patient advocate groups. In addition, the story
of David Reimer, published in John Colapinto's book As Nature Made Him: The
Boy Who Was Raised as a Girl, is receiving extensive media attention.
The Task Force was
formed by Ian Aaronson MD, a paediatric urologist at the Medical University of
South Carolina. Aaronson has, over the past decades, cared for many intersex
patients and is the author of chapters on the subject in several medical
textbooks.
"We are
committed to learn from past mistakes in order to offer the best advice and
treatment to our patients in the future," said Aaronson. "Long term
outcome data is very sparse and selective, and this puts surgeons on tenuous
ethical grounds. I was very gratified at the positive response from members of
the professional community and the patient advocate groups to the notion of
forming a Task Force."
NATFI brings
together specialists in surgery, endocrinology, psychology, ethics,
psychiatry, epidemiology, genetics, public health and representatives of
intersex patient advocate groups. With the participation of representatives of
the Intersex Society of North America and the AIS Support Group, the Task
Force is the first decision-making body on intersex medical care to have
included intersex patient advocates. "We are committed to achieving
consensus on these all-important patient care issues," said Aaronson.
The Task Force,
under Aaronson's chairmanship, is expected to address a number of issues,
including 1) establishment of standards for informed consent, 2) retrospective
review of the long term psychosexual status of patients treated for intersex,
3) establishment of guidelines for the management of children born with
ambiguous sex anatomy, 4) initiation of a prospective registry, and 5)
revision of medical nomenclature.
The Task Force, an
independent and self-governing body, has been endorsed by the American Academy
of Paediatrics, the American Urological Association, the American Academy of
Child and Adolescent Psychiatry, the American College of Medical Genetics, the
Lawson Wilkins Paediatric Endocrine Society, the Society for Paediatric
Urology, the Society for Fetal Urology, and the Society of Genitourinary
Reconstructive Surgeons.
NATFI EXECUTIVE COMMITTEE
Ian Aaronson MD
Medical University of South Carolina
Department of Urology
Julie Barthold MD
DuPont Hospital for Children
Division of Urology
Sheri A. Berenbaum
PhD
Southern Illinois University
School of Medicine, Department of Behavioral and Social Sciences
Michael Carr MD
Children's Hospital of Philadelphia
Division of Urology
Cheryl Chase
Intersex Society of North America
Sherri Groveman
Androgen Insensitivity Support Group
Melvin M Grumbach
MD
University of California at San Francisco
School of Medicine, Department of Paediatrics
Anne Marie Houle
MD
Ste Justine Hospital
Division of Urology
Douglas Husmann MD
Mayo Clinic
Department of Urology
Julianne
Imperato-McGinley MD
New York Presbyterian Hospital
Division of Endocrinology
Gerald Jordan MD
Norfolk Virginia
Suzanne Kessler
PhD
State University of New York at Purchase
Division of Natural Science
Antoine Khoury MD
The Hospital for Sick Children
Division of Urology
Barry Kogan MD
Albany Medical College
Division of Urology
Thomas Kolon MD
Naval Medical Center
Department of Urology
Peter Lee MD
Milton Hershey Medical Center
Department of Paediatrics
Lawrence
McCullough PhD
Baylor College of Medicine
Center of Medical Ethics and Health Policy
Patrick H. McKenna
MD
Connecticut Children's Medical Center
Department of Paediatric Urology
Ilan Meyer MD
Columbia University
School of Public Health
Heino Meyer-Bahlburg
PhD
Columbia University
Division of Child Psychiatry
Claude Migeon MD
Johns Hopkins Hospital
Department of Paediatric Endocrinology
Maria New MD
The New York Hospital, Cornell Med Ctr
Department of Paediatrics
William George
Reiner MD
Johns Hopkins Medical Institutions
Division of Child and Adolescent Psychiatry
Alan B. Retik MD
Boston Children's Hospital
Department of Urology
Justine Schober MD
Pediatric Urology
Sharon Schwartz
PhD
Columbia University
Department of Epidemiology
Linda Dairiki
Shortliffe MD
Stanford University Medical Center
Department of Urology
Eric Vilain MD
UCLA School of Medicine
Department of Human Genetics
Jean D. Wilson MD
University of Texas Southwestern Medical Center
Texas Southwestern Medical School
Selma Witchel MD
Children's Hospital of Pittsburg
Department of Endocrinology
Kenneth J. Zucker
PhD
Centre for Addiction and Mental Health--Clarke Division
Child and Adolescent Gender Identity Clinic
Next Meeting:
We are aiming for a meeting in November. We will send you more information on this a little closer to the date. If you have any suggestions regarding the format of the meeting, duration, location, points of discussion etc, please contact Elisabeth or myself (Ant).
with
questions or comments about this web site.