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Author Topic: Perth Voluntary Register  (Read 4710 times)
Quinny
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« on: July 30, 2013, 12:14:44 PM »

Background: The background to this is that I DNA matched with kdekker to find that she is my half-sister. We were conceived with the help of Dr Colin Douglas-Smith and we do not have donor codes.

We subsequently discovered that we have both registered on the Voluntary Register (her for 10+ years, me for 6 or so (I think)).
I wrote a letter asking why we were not matched on the Voluntary Register. I mentioned what we had in common, how we found each other and the DNA test.

I have received a letter back from the Voluntary Register.

I would like to get others' opinions about this letter. I will comment about it in the next post.

"The Voluntary Register uses donor codes or identifying donor information to establish links. We have reviewed your Voluntary Register application and are unable to match you with your donor or any other person as no records have been found.

The consensual basis of the Voluntary Register means that the Register can only initiate linking of parties when the donor code has been established. Links cannot be made with general non-identifying information such as treating doctor, blood group or other information that many unrelated people may have in common.

Social media does not operate under the same legal and ethical framework as voluntary government registers. Social media therefore does not impose restrictions on the participants. It is not appropriate for the Department of Health to comment on any other person who you believe to be a donor-related person.

The regulations established by Government mean that it is not possible for the Voluntary Register to provide any information that identifies a donor/s, a participant in any procedure involving donated material, or a person concieved using donor eggs, sperm or embryos unless:

  • each party has completed approved counselling and
  • each party has consented to the release of identifying information."
« Last Edit: August 08, 2013, 05:48:45 AM by Quinny » Logged

Donor conceived adult from Perth, Western Australia. Searching for a donor who donated to Dr Colin Douglas-Smith in 1976.
Quinny
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« Reply #1 on: July 30, 2013, 12:33:30 PM »

OK here goes...

"The Voluntary Register uses donor codes or identifying donor information to establish links. We have reviewed your Voluntary Register application and are unable to match you with your donor or any other person as no records have been found."

If this was the case why was my application (and others) accepted if it has no donor code or donor information on it?

"The consensual basis of the Voluntary Register means that the Register can only initiate linking of parties when the donor code has been established."

Yet when I first joined Antonia gave me the number of another (probably unrelated) donor conceived person who, on their form (likewise on mine), was ok for contact to be made.

When did this change?

"Links cannot be made with general non-identifying information such as treating doctor, blood group or other information that many unrelated people may have in common."

In whose opinion are they unrelated people? They could all be related!
While I accept that other donor conceived from Dr. Colin Douglas-Smith with A+ blood group may not be related to me - are there really so many? And if we have consented to contact on our application form why would this government bureaucracy try to block us?

Well maybe I am assuming too much. There might be too many applications submitted that actually reading them all is not feasible. If that is the case then I ask: what is the point?

"It is not appropriate for the Department of Health to comment on any other person who you believe to be a donor-related person."

Agreed.

"each party has completed approved counselling"

I would like to know where these regulations came from. When I submitted an application form there was no mention of any counselling.

I think my next step is to talk to someone in government about getting this changed so that it's actually possible to match those of us who have no donor codes. Or at least for us to make contact and work out for ourselves (if all parties want contact) if we are related or not.

Might even do this counselling if it'll help the process.
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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 30, 2013, 11:15:57 PM »

Good work Adam, the beauracracy of this stuff is mind boggling.
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Fennel
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« Reply #3 on: August 01, 2013, 09:43:58 AM »

Just for clarity and completeness, can you explain the background of their letter on this thread? At first glance it appears as though they have rejected your application to be on the voluntary register.

I'm suspicious that the register was setup by those wishing to appear conciliatory for past unjust behaviours, while not genuinely doing so.

The http://www.voluntaryregister.health.wa.gov.au/home/ says
" The Voluntary Register provides a service for donor offspring who wish to find out about their genetic origins .."
...yet at the same time seems to significantly reduce the prospect of achieving this goal by eliminating participation of those who are more likely to wish to use this service (IE those of an older donor-conceived generation who dont have the donor code).

Personally, I'm also interested to know if the managers of this service / register have actively tried to notify ALL past donors of its existence, and of the current cultural issues and debates going on regarding perspectives on past practices.

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Quinny
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« Reply #4 on: August 08, 2013, 05:44:55 AM »

hi Fennel,

The background to this is that I DNA matched with kdekker to find that she is my half-sister. We were conceived with the help of Dr Colin Douglas-Smith and we do not have donor codes.

We subsequently discovered that we have both registered on the Voluntary Register (her for 10+ years, me for 6 or so (I think)).
I wrote a letter asking why we were not matched on the Voluntary Register. I mentioned what we had in common, how we found each other and the DNA test.

The letter above is what I got back.

So my application was not rejected. At the time I joined I remember Antonia (who ran it back then) was quite helpful and was willing to put me in contact with other donor offspring (well one other anyway) and I know she did the same for Bundygrrrl (another donor conceived person).

My memory of it is hazy but I vaguely recall that the form asked how open we were to contact. Something like if we were willing to be contacted by the donor, other donor conceived, etc...

I put down that I was ok for all contact.

I believe this Voluntary Register service was set up because of Sue Hurst and Cyntra (egg recipient and donor) who wanted to meet each other but at the time the clinic was stopping them.

As far as I know the Voluntary Register has done and will do nothing to notify past donors or recipients. This Voluntary Register is not very well known at all.

« Last Edit: March 03, 2014, 12:06:16 PM by Quinny » Logged

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 #5 on: August 08, 2013, 11:13:58 PM »

Your right Adam about the circumstances of the set-up of the register although it was actually illegal for those two to meet up, so they even had to get the legislation changed - thankfully it was.
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