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All donor-conceived people in Victoria now have the right to donor information

29 February 2016

By Professor Sonia Allan and Damian Adams

Head of Department of Health Systems and Populations, Macquarie University, Australia; PhD candidate, School of Nursing and Midwifery, Flinders University, Australia

Appeared in BioNews 841

On 23 February 2016 the state parliament of Victoria in Australia passed legislation that will enable all donor-conceived people the opportunity to receive identifying information about their sperm, oocyte, or embryo donor(s) (see corresponding news article).

Referred to as 'Narelle's Law', the passing of the legislation honours the memory of a donor-conceived woman who died in 2013 from hereditable bowel cancer. Narelle had searched for her donor for 15 years, and had engaged in extensive lobbying, alongside many others, to create legal change for donor-conceived people to know their kin, heritage and medical history.

The model adopted is a world first in its application to donor conception (1, 2). It mirrors the approach taken in all Australian states in the 1980s, in which legislation was enacted to enable adoptees to have access to information about their genetic heritage – regardless of when they were born – subject to the ability of persons to place a contact veto.

The new Victorian law similarly gives rights to access identifying information about a donor, regardless of when the donation took place, and regardless of when the donor-conceived person was born. While the laws do mean that anonymity of previous donors will be removed, the system balances rights to information and rights to privacy. It does so by allowing people about whom information will be released to place a 'contact veto/preference statement' if they do not want, or wish to limit, contact with the other party. A penalty of up to A$7500 will apply if a contact preference is infringed.

Counselling and intermediary services will also be made available to all parties via the Victorian Assisted Reproductive Treatment Authority, to ensure proper support in cases in which information will be released, and/or when records no longer exist.

Emphasis in the passage of the bill was given to honouring the guiding principles of the Victorian Assisted Reproductive Treatment Act, which state that 'the welfare and interests of persons born or to be born as a result of treatment procedures are paramount' and that 'children born as the result of the use of donated gametes have a right to information about their genetic parents'.

In addition, it was recognised that donor-conceived people are not alone in their search. Recipient parents and donors had come forward during an extensive two-part inquiry conducted by the Victorian Law Reform Committee from 2010 to 2012 to support the release of information (3). That committee, chaired by Clem Newton Brown (then Liberal MP), unanimously recommended the release of information to all donor-conceived people, pursuant to adopting the suggested contact-veto system (4).

The changes were then moved forward by Labor MPs Jane Garrett and Anthony Carbines, who introduced a private member's bill in 2014, followed by an election promise by the Labour party to enact the legislation if and when they came to power, which occurred in November 2014.

Donor-conceived people, recipients, and donors continued to share their plight, and a national conference held in 2015 in Victoria, and subsequent campaign about being donor conceived, further drew attention to the issues faced by them (5). It remained the case that unless laws were changed, people born in Victoria had unequal access to information, the law prohibiting anonymity for donor conception post-1998, but only allowing for access to information with the donor's consent prior to that year. The lack of equal treatment was seen as unacceptable.

Following much public debate, the bill was introduced in late November 2015 into the Legislative Assembly. It moved to the Legislative Council in February 2016. With all parliamentarians being allowed a free vote, the bill received bi-partisan support in both houses of parliament. Donor-conceived people, their parents, donors, children, and their supporters watched from the galleries. Members of Narelle Grech's family were also there to see the passing of the laws.

It is clear that these laws have been a long time in their making, and have taken the work and support of a multitude of people, all of whom ultimately saw the prevailing justice in their passage.

Following the vote, the Victorian Minister for Health, Jill Hennessy, made the following pertinent statement: 'We believe all donor-conceived people should have the right to know about their genetic heritage, no matter when their donors donated.

'This information can make a huge difference to the lives of donor-conceived Victorians. If this information is available, it shouldn't be kept from them.'

The new laws will come into force on 1 March 2017.

SOURCES & REFERENCES
Journal of Law and Medicine 19(2) 354 | 2011
 
BioNews 623 | 11 September 2011
 
3) Inquiry into Access by Donor Conceived People to Information about the Donors, Victorian Law Reform Committee 2010-2012.
Victorian Law Reform Committee | 
 
Victorian Law Reform Committee | 28 March 2012
 
RUDC | 
 

RELATED ARTICLES FROM THE BIONEWS ARCHIVE

06 March 2017 - by Rikita Patel 
People conceived using donor eggs or sperm now have a legal right to identifiable information about their biological parents in Victoria, Australia...
21 March 2016 - by Professor Eric Blyth and Dr Marilyn Crawshaw 
The Government of Victoria should be applauded for confronting a dilemma that so many others have avoided...
14 March 2016 - by Professor Guido Pennings 
The State Legislature of Victoria has decided unilaterally to break their agreements with the sperm donors who donated before 1998 and will reveal their identity. It is difficult to imagine a measure that shows more disrespect for both donors and recipients...

30 November 2015 - by Pod Academy 
If you missed '10 Years Since the End of Donor Anonymity: Have We Got It Right?', a debate organised by the Progress Educational Trust (PET) in partnership with the National Gamete Donation Trust, then you are in luck. This podcast, produced by Pod Academy, captures some of the highlights from the debate....
09 November 2015 - by Arit Udoh 
'The kids are not alright.' 'Current legislation needs to do more to protect the rights of donor-conceived children.' These were some of the comments made by donor-conceived adults who attended a recent Progress Educational Trust/National Gamete Donation Trust event...
19 October 2015 - by Sarah Norcross 
The Progress Educational Trust and the National Gamete Donation Trust are organising a joint event to mark 10 years since the end of donor anonymity in the UK...
06 July 2015 - by Rebecca Carr 
The Australian state of Victoria has revealed plans to extend rules removing donor anonymity to allow all donor-conceived people access to identifying information about their sperm or egg donor, irrespective of the donor's consent or when they donated...

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