Australian Donor Conception Forum
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Author Topic: Donor Misconceptions Open Forum  (Read 8184 times)
Hursty
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« on: July 10, 2007, 11:51:41 PM »

Hi everyone
Just wondering if anyone else here has been to Donor Misconception Forum on Yahoo.
Its an international site but they have great news items and there is one on there at the moment about a boy who is looking not only for his donor but has formed a website where if you know the clinic and donors number you can register and match with 1/2 siblings. Maybe one could be set up for Australians in Australia by someone here who is smart enough to do something like that. Apparently there have been some matches. Also a man who was a donor and is meeting some of the children he helped to create. Its worth a look.
Sue
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Quinny
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« Reply #1 on: July 11, 2007, 04:25:43 AM »

I have looked at it before. It has some good stuff and it's open to anyone, so it has some dodgy stuff on there too. Smiley

I think you mean Ryan Kramer who set up the Donor Sibling Registry?

I believe a donor conceived person called Mike James (see Links section under Blogs) wanted to set one up in Australia but I have not heard from him for a while. His blog website is: http://mikejames-w.blogspot.com/

But anyone could attempt to set one up in Australia. I was sort of hoping this forum would become a hub for people involved with donor conception and that a register could grow from that. I do not like that the Donor Sibling Registry charges you to join up. If I had any involvement it would have to be free.
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Donor conceived adult from Perth, Western Australia. Searching for a donor who donated to Dr Colin Douglas-Smith in 1976.
dadams
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« Reply #2 on: July 11, 2007, 10:39:12 PM »

Narelle Grech had set up an Australian one a couple of years ago.
It was a yahoo based set-up.
Nobody new has joined for the last 12 months or so.
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Quinny
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« Reply #3 on: July 12, 2007, 03:58:35 AM »

I joined that one but it took ages to become a member, I guess no one checks it regularly.

This is sort of the problem, there is no centralised place to co-ordinate this stuff.

When I get some time I'll try creating a proposal to set up an Australian register and create a website for it and send the info out to my donor offspring contacts, who hopefully will pass it on to their donor offspring contacts...
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Donor conceived adult from Perth, Western Australia. Searching for a donor who donated to Dr Colin Douglas-Smith in 1976.
dadams
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« Reply #4 on: July 12, 2007, 10:29:38 PM »

Fair enough.

I though about doing one a couple of years ago seeing the govt certainly wasn't doing anything. But I have had neither the time or experience in setting up web-based sites and databases.

Go for it. I'll help in anyway I can if you need it.
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Hursty
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« Reply #5 on: July 12, 2007, 10:49:46 PM »

Well I am certainly the last person here who could help but just imagine if you guys could get one up and running and found 1/2 siblings for people - not to mention yoursselves - how wonderful would that be. Of course people would have to know that they were DC themselves in order to join. I would love to see this happen.
Even the odd past donor might show some compassion and join. But even if the donor's themselves dont - I'm sure there are plenty of DC people who would be interested.
If it could be done before Jan 08 - it could get a mention and a bit of advertising on SBS doco?
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Quinny
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« Reply #6 on: July 13, 2007, 04:22:20 AM »

Thanks Damian and Hursty.

I am having trouble getting time to do this. I'll probably need Mitch's help to see if I can host such a thing the same place as this forum and what database I can set up. But that's not too much trouble.

I'd definitely like help on the layout and what to include. Sort of like what information people should enter in searchable fields and how to determine if people match. I guess I could start by having something similar to what we fill in to join the Voluntary Register and go from there. All help would be appreciated.

I'll first need to look into what's involved in setting up such a database online, then I can start building some sort of registry front-end. Smiley While I am doing that any suggestions that people have will be taken on board.

Cheers,
Quinny
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Donor conceived adult from Perth, Western Australia. Searching for a donor who donated to Dr Colin Douglas-Smith in 1976.
Hursty
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« Reply #7 on: July 13, 2007, 11:15:25 PM »

Good on you Quinny.  I wish I had knowledge on this. Perhaps you could contact this Kramer guy or access the American website and ask questions?
I know it will take time - especially with having a new family to spend time with and also work etc.. etc... - I get into trouble all the time for spending too much time at this desk!! I hope it works out. You know, I wouldnt even know what to enter to join Jethro as recipients of an egg donor as we didnt get a "number". So how could we match with any half siblings? Only "number" we got was an embryo freeze number and our other recipients would have had a different number to ours. I wonder why egg donors are different in this way. Perhaps because a vial of sperm can go so much farther than eggs? Maybe Cyntra has a number we dont know about.
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Quinny
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« Reply #8 on: July 15, 2007, 12:40:07 PM »

Not to worry, I am not expecting anyone to have a reference number. Smiley You are right, I am having trouble finding time. This weekend was especially busy. I look after Isaac on the non-regular weekend days that my wife works and then try to find time to socialise with friends and family. Oh, and then there must be time to relax. Smiley
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Donor conceived adult from Perth, Western Australia. Searching for a donor who donated to Dr Colin Douglas-Smith in 1976.
dadams
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« Reply #9 on: July 15, 2007, 10:28:18 PM »

Hi Adam

I can certainly help especially with some things that may be inheritable that you may want to include on the register. The form that you guys filled out in the west would be a good start and we can just add and subtract things that are appropriate.

Cheers
Damian
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Quinny
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« Reply #10 on: July 16, 2007, 01:39:14 PM »

I thought they might have a copy of that form on the website but they do not. They have this written though:

Information provided on the registration forms is recorded on the Register. This includes the name, address and other details provided, as well as the services requested.

Services that may be requested include:

- registration of the registrant's name and other details;
- request for non-identifying information about the other donor party;
- request for identifying information about the other donor party (subject to the consent of the other party);
- preparedness to be notified if the other donor party is diagnosed with a serious heritable medical condition or illness and he/she or the parents request this notification;
- provision of updated information to be recorded on the Register; and
- contact with the fertility clinic or medical practitioner to assist in making a 'match' with another donor party. If the clinic provides a matching ID number and non-identifying information, that information is recorded on the Voluntary Register. (This service is for people involved in donation prior to April 1993 only, ie before the Act came into operation).

--------------------------
So I can't remember every field on that form I'd have to ask for another one to be mailed out, or ask someone else who has one.

I also checked the Donor Sibling Registry website and they have these basic fields when you join:

- Username
- Password
- Email
- You are a: Parent, Sperm Donor, Egg Donor, Donor Offspring or Other
- You in your own words (description)
- First name
- Last name
- Address
- City
- State
- Post code
- Country
- Website address
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Donor conceived adult from Perth, Western Australia. Searching for a donor who donated to Dr Colin Douglas-Smith in 1976.
dadams
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« Reply #11 on: July 16, 2007, 10:51:10 PM »

Adam,
there are many things that can help secure a match but are things that we would not want to be accessible to a publicly viewable document/website.
These are things like blood group of the child and known biological parent.
Eye colour etc that do have genetic inheritance patterns that are easy enough to follow.

Regards
Damian
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Daven
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« Reply #12 on: July 20, 2007, 12:29:13 AM »

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« Last Edit: June 25, 2011, 11:06:05 AM by Fiona » Logged
robynb
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« Reply #13 on: July 22, 2007, 09:15:40 AM »

Ive also considered setting up an online registry (I'm an IT Security consultant and have also developed many websites). However, I am concerned about the quantity (and lack of quality) of "registries" popping up all over the place... the Yahoo one, this one, the "offline" ones, etc. If it is developed it needs to be high quality (and high security).

I admininster the SMC Australia forums, and I know a few of the women there have expressed concerns re privacy. A few people requested that a section be created there to register donors etc but I was reticent to given the privacy requirements.

Anyway, if I can help in anyway at all, let me know.
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Robyn
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