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varta.org.au
Donor linking
– The Victorian Experience
Kate BourneDonor Registers Service manager
Assisted Reproductive Technology Summit
www.varta.org.au
Outline
• Exhibition
• What is donor linking?
• Evolution of Victorian legislation
• VARTA service delivery
• Outcomes of applications
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Dedicated to- Narelle Grech
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Curator – Kim Buck
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Archivist – Roger Clarke
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Music – Chloe Allworthy
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Health Minister Award for Volunteers!
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Not everyone can have children easily….
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Many people need help….
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….Sometimes a donor is needed
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Many families have been helped this way
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Many embryos have been formed
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with many successful pregnancies
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and many beautiful babies created
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who grow into beautiful children!
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It was thought that no one would ever
want to know about their donor
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Donor codes were given to
preserve privacy
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… but people often need to know
where they have come from
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…and donors are often happy to
give information
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Many people in Victoria have
lobbied for changes over the years
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so that donor-conceived people could
find out more about their donor
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and also connect with other families who
have used the same donor
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Mostly it’s about saying thank you
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Tree of thanks
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Getting to know each other and
redefining what family means
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Sometimes find amazing similarities
– such as Roger…
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.. and his biological daughter!
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What is donor linking?
The exchange of information/meeting between people connected via donor conception treatment
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Research
• It is normal and healthy for donor-conceived people to want to know about their donor and many do (though not all want to)Blyth, et al., 2012, Hertz, et al., 2013, Victorian Law Reform Commission 2012, Ravitsky 2012
• Donors report wondering about the people they helped create and often agree to give
information/contact.Daniels and Kramer, 2013, Kirkman, et al., 2014, Riggs and Scholz, 2011, Speirs, 2012
• A growing number of recipient parents are wanting information/contact with their donorRodino, et al., 2011, Goldberg et al 2015
• Contact with the donor has generally been positive. Crawshaw et al 2013, Freeman et al 2009, Johnson et al 2012,
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Victoria
• Pioneered donor conception law
• Legislation has evolved over time>
increasing rights to DC
• Currently all DCP’s, parents and donors
have a right to apply for information –
consent required for all except post 1998
DCP’s
• From 1st March 2017 all DCPs will have
the right to identifying information about
donor.
• Donors can lodge a contact preference
• VARTA to manage donor conception
registers
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Contact preference – for donors or DCP’s
• to be contacted in a
specified way e.g. email,
phone or letter
• to utilise the donor-linking
services of VARTA
• not to be contacted by the
applicant (or kids)
• Penalty applies if breached
(Max $7,583)
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Process of donor linking
Applicant completes Application form
Applicant writes Statement of Reasons with VARTA counsellor
Statement of Reasons sent to subject of outreach (if located)
Subject may complete Contact preference form
VARTA counsellor:
• facilitates and exchange of information contact if agreed to
• steps out once information exchange/contact occurs
•Remains available to provide support to each party if issues arise
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What happens next?
• Honeymoon phase or may have gaps in communication/clunky
• Depends on individuals
• May meet once only
• Some continue to write
• Some form friendship
• Often takes years to build firm relationship
• Each may feel uncertain where they fit in - who are we to each other?
• May have issues with partner, extended family
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Complexities - redefining family
• Donors can donate to 10 women
• Can be multiple connections
• Who knows what about whom?
• Roles & boundaries
• How is it for new and old links?
• Will all get fatigued & overwhelmed?
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What can go wrong?
Good people with good will and
intent BUT:
• Rush > crash and burn
• Don’t discuss expectations or
hopes for future
• No boundaries or clear roles
• Each not sure what the other
wants
• Other family members not
informed/involved > angry,
betrayed, unsupportive
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Donor linking etiquette
• No guidebook - all are still learning
• What’s appropriate/ inappropriate?
• Normal to feel excited and anxious
• Don’t rush: go slowly and carefully
• Often gaps in contact
• All relationships take time to build
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Donor Registers – Central RegisterFinancial year 2015-16
Clinic notifications of births From
sperm
donation
From egg
donation
From
both egg
& sperm
donation
Total
Total notified as at 30 June 2015 4968 1782 391 7141
From 1 July 2015 to 30 June 2016 373 137 55 565
Total notified as at 30 June 2016 5341 1919 446 7706
3,107 are now 18 years or older and eligible
to apply for information about their donor
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Central Register – DonorsFinancial year 2015-16
Registered donors by typeSperm
donor
Egg
donorTotal
Total registered as at 30 June 2015 1127 1506 2633
New donors registered 1 July 2015 to 30 June 2016 476 114 590
Total registered donors as at 30 June 2016 1603 1620 3223
The number of new donors registered in 2015-16 was 590
- around double the number in the previous FY (298).
The increase in the number of sperm donors registered almost
tripled in 2015-16 (476) compared with the previous year (120).
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* A person can submit more than one application
Referrals received
BDM application referrals received 162
Central Register referrals 91
Voluntary Register referrals 71
Applicant types Central Register Voluntary Register
Donor 9 26
Donor-conceived 46 21
Recipient 36 22
Relative of donor / donor-conceived 2
Donor Register ServicesFinancial year 2015-16
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Donor Register ServicesFinancial year 2015-16
No. of cases raised 139
Applicant seeking information
about a subject
123
Subject of an application 16
Cases closed 67
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Outcomes of cases seen by VARTA
Subject – donor code
unknown
3
Subject located 32
Subject not located 11
Subject – ID released 23
Subject not consented 4
Applicant will not proceed 5
Unknown outcome 1
Donor Register ServicesFinancial year 2015-16
Note: a number of referrals are still in process.
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Conclusions
• Most positive about making contact
• Relationships still developing
• Respect, sensitivity & good will key ingredients to any good relationship
• Early days > All still learning
• Moral and ethical responsibility to ensure ‘the kids are all right’
• Follow up research & evaluation needed
• VARTA website: exhibition, films, podcasts & resources
Thank you