varta.org.au

Donor linking

– The Victorian Experience

Kate BourneDonor Registers Service manager

Assisted Reproductive Technology Summit

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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