OII Australia dialog with Andrology Australia about XXY people

On Mon, Mar 16, 2009 at 1:52 PM, Gina … wrote:
PARTICIPANTS NEEDED FOR STUDY INTO THE PERSONAL IMPACTS
OF KLINEFELTER SYNDROME

Dear Amy

I have received information about a study into Klinefelters you are conducting.

I was curious to know why you are only interested in studying XXY men. Organisation Intersex International has many members who are XXY and are not men.

Many of those who are not men report great distress because of treatment paradigms that insisted they were.

Is your study only seeking those who fit into current identity and treatment paradigms or do you seek to examine all possible XXY individuals?

Gina Wilson

Organisation Intersex International

From: Amy Herlihy
To: Gina
Sent: Friday, March 20, 2009 11:39 AM
Subject: Re: PARTICIPANTS NEEDED FOR STUDY INTO THE PERSONAL IMPACTS

Dear Gina,

Thank you for contacting me regarding the study on Klinefelter Syndrome (KS). I was very interested to read your email and the points you raise. Sorry I have not replied sooner.

As you may be aware, there is very little information about what proportion of people with KS identify as intersex, or as female (or not male). Based on the information available to us at the time we were developing the project, we made the decision to use terms referring to males in our study material.

Firstly, we apologise if this reference has caused you or anyone else any offence. Secondly, we would like to thank you for taking the trouble to draw this to our attention. We have received similar comments from other intersex organisations and clinics, and have since acted on this information.

We recently finished changing our study materials to refer to “individuals with KS”, rather than “males with KS” so that the study is inclusive of everyone who has been diagnosed with KS. You have received the older study materials – I have attached the updated form for your reference. Unfortunately we are not able to change everything in the actual questionnaire, because some technical medical terms need to be used to make our study scientifically valid.

Because there is very little information available on individuals with KS who do not identify as males, we are especially keen to hear about the experiences, views and opinions of this group of people.

I hope this answers your question. Please feel free to contact me if you have any further questions or comments.

Kind regards,
Amy
————-
Amy S Herlihy
PhD Student
Andrology Australia
Monash University
Prince Henry’s Institute

Public Health Genetics
Murdoch Childrens Research Institute
Royal Children’s Hospital
Flemington Road, Parkville
Victoria 3052 Australia
Phone: (03) 8341 6370
Fax: (03) 8341 6212

www.andrologyaustralia.org
www.mcri.edu.au

On Fri, Mar 20, 2009 at 11:50 AM, Gina <…> wrote:
Hi Amy

Would you like me to pass on this request to my organisation ?

I am a board member of Organisation Intersex International. We have quite a few members who are XXY and do not identify as male.

Gina Wilson

From: Amy Herlihy [klinefeltersyndrome@gmail.com, amy.herlihy@mcri.edu.au]
Sent: Friday, 20 March 2009 12:13 PM
To: Gina
Subject: Re: PARTICIPANTS NEEDED FOR STUDY INTO THE PERSONAL IMPACTS

Hi Gina,

Thank you – I would be very keen for you to pass along the study information/request to your organisation. Please feel free to distribute the form I sent you to anyone you think might be interested in finding out more about the project.

The only thing I should point out is that (at the moment) the study is solely being conducted within Australia. This means that participants need to have grown up in Australia, or have been diagnosed in Australia. In the future, it would be great to do this kind of study on an international scale. Hope this is still relevant to members of your organisation.

Thanks again for your assistance.

Kind regards,
Amy

4 Comments

canice

I know I didn’t contribute; I must have been overseas. Any idea how that turned out and hey, wasn’t it great how they were more than willing to work with you? Do you think I could copy and paste a link to this somewhere, perhaps the XXY orgs throughout the world ?

Canice

Angela Erde

Canice,

I only just received these emails and posted them as fast as I could.

I phoned the number given in the emails for Amy, in search of the updated materials and form she mentions, but I have just been told that recruiting for participants ceased earlier this year, and that Amy is currently in Europe presenting her findings, and will return to Melbourne late June.

We have no idea whether her study ever did include any XXY people who are not male.

Please be my guest and post a link to this post at XXY organizations elsewhere, although to what end, I wonder?

I have sent Amy an email and hope to hear more soon.

canice

Upon further research, would you believe I actually posted about the recruitment drive to the various orgs, though clearly my posting was before Gina’s correspondence which explains why I had not participated ;-(

Thanks Angela for going the extra distance.

Angela Erde

Canice,

IMHO it is crucial that science and medicine be held accountable for their many failings in conducting their research and for the far too often negative effects of their actions.

I queried Andrology Australia on their apparent exclusion of non-male XXY people quite some time ago – I have personally known some wonderful, admirable XXY females and androgynes – and was amazed at how the Andrology Australia website fails to acknowledge they even exist. So as soon as I received the email correspondence I published it and tried to chase up the updated documents described therein.

It feels like I am singing that same damned song all the damned time when it comes to such blatant exclusion, but if we don’t do it then nothing will ever change for the better.

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