CHAPTER 3 - Establishment of a national register
This chapter examines whether the establishment of a national register
to retain information about donor conception practices would address issues in
relation to the current management of donor conception data. In particular, this
- arguments in support of a national register;
- suggested approaches for a national register, including:
the role of the register;
- what information could be captured;
- how the register should be administered;
- how the register would operate;
- the need for donor conceived people to access information about
their biological siblings; and
- whether the register should be retrospective;
- opposition to the establishment of a national register; and
- the role of a voluntary register and an associated DNA database in
enabling donors and donor conceived people whose records have been destroyed to
locate one another and any donor siblings.
Support for the establishment of a national register
The majority of submitters and witnesses supported the establishment of
a national register in place of state-based registers.
Support for a national register generally resulted from concerns about the
current management of data in relation to donor conception. Such concerns stem
from differences in legislation and regulation, and access to information for
donor conceived people (and their families) across Australia, along with
concerns about compliance with the NHMRC Guidelines and RTAC clinic
Historical record-keeping practices
A number of submissions indicated that record-keeping practices in the
early days of donor conception were very poor, with clinics only retaining
records for a limited period.
This approach reflected the view which existed during the 1970s and 1980s that
donor anonymity should be maintained. As Mr Michael Williams, a donor conceived
person, informed the committee:
I contacted the doctor who practised at the clinic at which
[I] was conceived...[The] junior doctor...told me that all records of my donor
had been destroyed. He was very nice to me. He apologised that attitudes in the
early 1980s were different and that a policy of secrecy between offspring and
parents and between the medical profession and the state and offspring
Mr Warren Hewitt of the DCSG also noted:
[t]he...people, whose records were destroyed, came about
because clinics had made guarantees to donors that their identity would never
be revealed and clinics became afraid that they [would] be in a position of conflict,
so they destroyed the records.
Ms Kimberley Springfield asserted that such attitudes reflected the view
that records relating to donor conception should be treated in the same way as
any other medical records.
Dr Sonia Allan made a similar point:
[t]he retention of information on donors has traditionally
been within the sole discretion of medical clinics and doctors performing donor
conception. State and territory legislation specifies a period in which medical
records must be retained but, after this period, information on donors may be
destroyed. It is therefore common for donor‐conceived individuals,
when informed of their donor‐conceived status and curious for
information about their donor, to be informed by the clinics at which
they were conceived that such information has been destroyed.
Variations in record-keeping
While record-keeping practices have improved since the 1970s and 1980s, there
is still wide variation between jurisdictions regarding record-keeping
requirements. In Victoria, New South Wales and Western Australia, which have
registers, clinics are required to provide information about donors, donor
recipients and children conceived through donor conception procedures to the
Registrar of Births, Deaths and Marriages, or a similar body, for entry into a
It appears that in states and territories without registers, these births are
only reported to the Australian Institute of Health and Welfare's National
Perinatal Statistics Unit.
Ms Kate Dobby, a submitter who worked for four years at the Donor
Registers Service in Victoria, noted the difficulties in accessing information
across jurisdictions because of the variations in record-keeping practices:
[o]ne of the main difficulties that I encountered in my work
was the inability to access the information (whether held by a Victorian or
interstate clinic, hospital or other body holding records) that was needed in
order to fulfil the management of the Registers. This was not just because
there has been a history of this information being destroyed or haphazardly
collected by practitioners and clinics, but was also a direct result of the
lack of specific provision in legislation and regulations to enable the
Regulator to have the authority to access relevant information, whether in
making provisions for access to records relating to a clinic or agency which
had closed, or to access records held interstate by a body outside of
jurisdiction (but involving records of patients or donors relating to the
requesting jurisdiction). This had implications for my ability to release
information to people [to] whom the legislation granted rights of access.
Record-keeping under NHMRC
The NHMRC Guidelines apply in jurisdictions where there is no
legislation specifically regulating the management of data in relation to donor
The NHMRC Guidelines specify that clinics should store all relevant information
about participants indefinitely, in a way that is secure but is accessible to
all participants (under the conditions set out under the NHMRC Guidelines).
In particular, the NHMRC Guidelines provide the following advice on data
[c]linics should have the following overall arrangements for
- arrangements to store relevant information about participants in
a procedure involving the use of donated gametes or embryos in a way that is
secure but accessible to the persons born as a result of the procedures, and
the participants, under the conditions described in paragraphs 6.10 to 6.13 [these
paragraphs relate to entitlements to information by donor conceived people,
including medical information and personal information, and providing donors
with information about children born from their donations];
- arrangements to ensure transfer of records to a suitable person
or location when a clinic closes or a practitioner ceases to practise (such
arrangements should ensure that records stay with the gametes and embryos to
which they relate); and
- provision to keep records indefinitely (or at least for the
expected lifetime of any persons born).
While the NHMRC Guidelines specifically provide for the transfer of
records, Mrs Caroline Lorbach from the DCSG argued that these obligations
do not assist where:
records...are being held perhaps in garages, in storage from doctors who have
retired or doctors who have died. Their children are probably holding on to
some records. So we have a lot a very valuable records being held outside
clinics. One of our son's records are being held by a pharmaceutical company.
Mrs Lorbach went on to explain that, in relation to her son:
[w]hen we first approached the clinic where we conceived him,
we wanted to write a letter to the donor to say thank you and...to ask whether
in future he might be willing to answer any questions. The clinic said they
would contact the donor for us but we got a reply...saying that they could not
find him, that he was not at the address he had registered. So we left it for a
while...We then spoke to a counsellor and asked again could she try to find the
donor and could she use other means of finding him, perhaps electoral rolls.
She said yes, that they would do that. She got back to us quite quickly and
said that she had found the donor at the address the clinic had—he had never moved.
Our only conclusion was that the clinic had lied to us when they told us that
they had tried to contact him. What happened then was that the donor did not
want to have any contact with us but he was willing to give the counsellor a
good amount of information which we could pass on to our son. To get the basic
information, to contact that donor the counsellor had to then go to the
pharmaceutical company to get the contact information which was in storage
A number of submissions noted that records about donor conception need
special protection and should be held permanently for donor conceived people
(and their children) to access easily.
Variations in nature of data
As noted earlier in this report, the NHMRC Guidelines require clinics to
keep information from gamete donors (or gamete providers for donated embryos),
such as the donor's name, date of birth, address, details of physical
characteristics and details of their past medical and family history.
However, submissions from SMC Australia and others
highlighted that there is great variation between states and territories, and
even between clinics within the same jurisdiction, in relation to the recording
and release of information about donors and any offspring conceived as a result
of their donation.
Tracking past donors
Some submissions noted that most treating clinics and doctors do not
have the expertise or the facilities to keep track of past donors and patients,
or to facilitate contact between donors and donor conceived people. However,
there is an implicit obligation to do so where they hold records relating to
The NHMRC Guidelines place the onus on donors to keep clinics updated:
[c]linics should tell gamete donors (or gamete providers for
donated embryos) that it is their ethical responsibility to keep the clinic informed
about any changes to their health that may be relevant to the persons born or
the recipients of their donation, and about changes to their contact details.
However, on the basis of evidence received during the inquiry, it would
appear that donors are not keeping clinics updated. To illustrate this point, Ms Fiona Hearne
of SMC Australia provided the following example:
[w]e have a member with a child who is not yet one year old.
She has asked her clinic to see whether her donor would be open to receiving a
letter, which he indicated on his form. The clinic have told her that they have
lost contact with him. This is not a donor who would have donated 10 or more
years ago; this is a recent donation.
Many submissions noted that there is substantial variation in relation
to the handling of requests for information or for assistance in facilitating
contact. For example, some submissions noted that the clinics they had
encountered were reluctant to assist because they were not legally empowered to
provide information or facilitate contact.
Others highlighted that many clinics do not have any procedures or guidelines
in place on how to handle such requests, and that requests are handled on an ad
hoc basis, with the level of assistance provided often depending on the
willingness of the particular individual handling the request to assist.
Some submitters indicated that the lack of clear procedures to locate
donors can leave individuals having to personally pursue various avenues to try
to locate information about their donor. For example, after being told by the Infertility
Treatment Authority (ITA) (which held the relevant records) that it could not
write to her donor to see if he was willing to disclose his identity, Miss
Lauren Burns personally tracked down the doctor who facilitated her conception,
who subsequently agreed to write to her donor.
Ms Robyn Bailey of SMC Australia advised the committee
that clinics vary in the amount of effort they are willing to make to assist
parties to locate donors.
However, Mrs Leonie Hewitt of
the DCSG indicated the Royal Hospital for Women went to 'extraordinary lengths'
to assist her family, and 'need to be commended for that'. Further:
[the Royal Hospital for Women] have set up their own
voluntary register—sadly, it is hidden on their website. We did some publicity
for that years ago. They did electoral checks. They did an internet search
Sydney-wide and Australia-wide. They sent letters out to people with the same
surname. They have his surname but no date of birth. So they did an awful
Dr Martyn Stafford-Bell of the Canberra Fertility Centre indicated that,
if his clinic was approached by a donor conceived child, 'then we would make
every possible effort to contact the donor'.
Need for national consistency
SMC Australia argued that the current system of 'jurisdictional
differences and industry intransigence related to donor data management have
combined to produce outcomes which are demonstrably inequitable, inefficient,
unfair and unreasonable'.
At the public hearing in Sydney, Ms Robyn Bailey of SMC Australia
expanded on this argument:
...at best, clinic governance is ad hoc and, at worst,
non-existent around Australia. Obviously it varies between the states. SMC
Australia members [support] a national donor conception framework that upholds
the rights of all humans. This must include a national register that is
complete, accurate, current and retrospective and which provides a sound basis
to ensure that all children are treated the same, regardless of birthplace or
The DCSG also argued that any national register must be 'independent of
service providers' and should 'store the identity of gamete and embryo donors,
recipient parents and donor conceived people past and present'.
At the public hearing in Melbourne, Ms Marianne Tome, from the Victorian
Infertility Counsellors Group, stated that her organisation recognises the
rights of 'all donor conceived individuals in Australia to have access to
information about their biological parents and genetic siblings', and that
'access to such information should be through a national central register such
as that established in Victoria'.
In her submission, Dr Sonia Allan noted that Sweden, Austria,
Switzerland, the Netherlands, Norway, the United Kingdom, New Zealand and
Finland all have legislation that provides for the disclosure of donor
identity. She advised:
[i]n all [these] jurisdictions, since the inception of their
respective legislation, a prospective donor is required to consent to the
release of his or her identity to any offspring who requests this information
and such consent is secured in advance of the collection and use of gametes or
embryos. Information is then held on a registry that may be accessed by donor
Suggested approaches for a national register
Several different approaches for a national register were suggested
during the course of the committee's inquiry. Issues canvassed in this regard
- the role of the register – whether it should simply be a
repository of information that individuals are able to access in certain
circumstances, whether it should also have a role in facilitating contact
between donors and donor conceived people and their families, and further,
whether the body responsible for the register should have a regulatory role in
enforcing compliance by clinics with their obligations;
- what information could be captured – whether both non‑identifying
and identifying information should be stored, the type of information, and
specific requirements for clinics, doctors and private individuals to report
information about donor conception to the register;
- who should administer the register – whether it should be
administered by the private sector, by state and territory governments, or by
the Australian Government, and, if administered by government, which body
within the relevant government would be responsible for its administration; and
- how the register would operate – the type of information individuals
will be able to access and in what circumstances, and whether the register
would be retrospective.
Role of the register
There were differing views on what role a national register should
perform. Many submissions argued that the establishment of a national register
would provide a central repository of information about donors and donor
conceived people, as well as a central place for people to access that
It was also submitted that a national register should not only be a
repository of information, but should also have a role in facilitating contact
with people affected by donor conception.
For example, Miss Laura Burns commented:
[t]he keystone to the functioning of a reformed system based
on openness and honesty is resourcing the Authority managing the National Donor
Register to offer donor linking services with specialised counselling available
in each state to any person who requests it. The Authority must be properly
resourced to employ counsellors who are able to act as intermediaries,
facilitating contact between donors, donor conceived people and their
As an example of a service that could be provided by a national
register, some submitters referred to the letterbox service in place in Victoria
which acts as an intermediary to enable people to exchange letters in a non‑identifying
manner, rather than, or preceding, meeting with the other party.
Another submitter suggested that it may be appropriate and helpful for
donor recipients to be able to contact the donor, 'to ensure that the sperm
donor is a decent person before embracing him with our children'.
The register could also play a role in arranging contact with other
relatives of the donor. Mr Adam Quinlivan, a donor conceived person, suggested
that, even where a donor chooses not to have contact with a donor conceived
child, the decision of a donor not to have contact should not prevent other
members of the donor's family from having contact with the donor conceived
Some submissions suggested that, where records no longer exist, a
national coordinating body should be proactive in finding past donors.
Submitters also noted the importance of ensuring that information on the
register is kept up-to-date if it is to be of any use. It was specifically
suggested that there should be capacity to add updated medical histories and
contact details of both donors and donor offspring to the register.
Some submitters suggested that the register should accord donor conception
records with special protection and that these records should be held
There were also suggestions that a central repository of information
would make it possible to oversee and enforce compliance by clinics with their
obligations, such as enforcing limits on the number of people that donors are
permitted to assist.
Information to be recorded
The committee received evidence that a national register should retain records
of the numbers of donor conceived people born through ART procedures undertaken
in both clinics and private arrangements,
and that the quality of the information kept about donors should be improved.
The DCSG suggested that, in order for a national register to resolve the
shortcomings which currently exist with clinic or state-based registers, there should
be mandatory reporting by all people using donor conception practices about the
use of donated gametes and embryos, and live births which result.
Several submissions noted that the same reporting obligations should also apply
in relation to international donations
and private arrangements.
In addition, some submitters suggested that there needs to be better
consistency regarding the level of detail and amount of information recorded,
to improve access to information for donor conceived people.
Some submissions emphasised that improving the amount of information collected is
important so that donor conceived people are given sufficient information about
the donor's medical history in order to assist them to most effectively manage
Retaining sufficient information is also important in circumstances where, for
example, a donor becomes untraceable or dies.
Dr Sonia Allan advised the committee of the types of information that
she thought should be retained:
Date of birth
Medical History (personal and familial to the extent to which
it is known) – this should be updated every five years. The onus to update such
information should fall to the clinics or registry rather than the donor (who
may not follow up).
Education (level and qualifications)
Number of children (if any)
Year of birth
Place of birth
Nationality/culture with which the donor identifies
Religion (if any)
Reason for becoming a donor
Number of offspring born through other donations
Identity of other offspring born through other donations
**Anything else the donor considers central to their
personality would also be useful for a donor conceived individual to know.
Ms Robyn Bailey of SMC Australia made a suggestion along similar lines:
[f]ully identifying information including name, address,
contact details, email address and that sort of thing is kept for later use,
and the information on health, eye colour, hair colour and all that sort of
thing is what we are getting at the moment. There needs to be something put in
place so that contact is not lost in 16 or 18 years time or whenever a child
How could a national register be
Some submitters felt that, given the importance and sensitivity of
information regarding the identities of people involved in donor conception (including
medical information), information would be best safeguarded by being held by a
government authority, rather than by private individuals.
Mrs Caroline and Mr Patrice Lorbach suggested that medical professionals are
not trained in record-keeping and therefore should not have a controlling
interest in this area.
A number of submissions suggested that the Commonwealth should be
responsible for administering the register.
Mrs Myfanwy Cummerford, a donor conceived person, suggested that the
Commonwealth has a responsibility with respect to ensuring that donor conceived
people have access to information about their donors by virtue of the
Commonwealth's facilitation and funding of the practice of donor conception.
Mrs Lorbach of the DCSG endorsed the model of the Victorian Government and
stated that the previous Infertility Treatment
Authority (ITA) (now the Victorian Assisted Reproductive Technology
Authority (VARTA)), was 'world leading in the way it was being run'. In her
view, people with appropriate expertise should run the register:
I would trust the government to look after this information
more than I would trust a company to look after it. I do not think a company, a
place of business, is the appropriate place for what is in effect birth
certificate type information. I think it would be much easier for a clinic to
be broken into and have information taken from it than for a government
E6A43Trood, Sen Russell0unknown43unknown1unknown43unknown1However, the
Canberra Fertility Centre's submission suggested that a centralised register,
rather than local registers, may deter some people from donating because they
may prefer for their identifying information to be held outside government
departments due to confidentiality concerns. The Centre recommended maintaining
the management of data involved in donor conception by individual clinics.
At the public hearing in Canberra, Dr Martyn
[p]eople feel that if their data is kept on a register run by
professionals in the field with vast experience then it is handled sensitively
and in confidence. It is like going to see your doctor. They are very afraid, rightly
or wrongly, of having their intimate details on a government register to which
they believe any Tom, Dick or Harry living around the corner can log in and
gain access. Whether or not that is true I do not know, but it is the
perception of the general public.
He suggested that if the Commonwealth were to establish a central
...the [Fertility Society should]...run a central register.
There are certain advantages from this that I would see. No. 1 is that the
patients would not be afraid or have any horror of a register run by the [Fertility
Society]. No. 2 is that it would be run by people with great experience in
the field. No. 3 is that it would be run with great sensitivity, and No. 4
is that it would be very, very much cheaper than a government run central
The Commonwealth Office of the Privacy Commissioner (Privacy
Commissioner) also raised a number of privacy issues with the creation of a
[g]enerally speaking, centralised databases of 'personal
information' can be tempting to hackers and organised crime (e.g., as material
for potential identity theft). Further, the administrators of centralised data
repositories are sometimes subjected to pressure to use, or allow the use of,
the repository for purposes that are unrelated to the reason it was established
The Privacy Commissioner also suggested that any organisation or agency
administering a national register would be obliged to put in place appropriate
security measures, and should also put in place measures to prevent 'function
Who should be able to access
information and in what circumstances?
Some submitters supported donor conceived people being able to access
identifying information about their donor once they reach the age of 18 years,
without the need for parental permission.
However, some individuals suggested that donor conceived people should have
access to identifying information about their donor before the age of 18 to
reduce identity issues.
Ms Romana Rossi, a parent of a donor conceived person and member of
TangledWebs, suggested that there should be visitation rights for the donor
conceived person to be able to establish a relationship with their biological family
before they reach 18 years of age. She noted that '[t]he adoption
experience has shown that it is nearly impossible to have a parental/child
relationship with someone you meet in adulthood'.
Dr Sonia Allan suggested that donor conceived people should be able to
access information after they reach the age of 16 years, and that they should be
permitted to access the information earlier if they do so under the guidance of
a counsellor, youth worker, parent, guardian or other responsible adult.
SMC Australia similarly supported a system in which contact between donors, recipients
and donor conceived people is facilitated where there is a mutual desire to do
so before the donor conceived child turns either 16 or 18 years of age.
A number of submitters also suggested that donor conceived people should
be able to access information about their donor's medical history from an early
Some submissions noted that the lack of detailed medical history in relation to
donors may hinder medical treatment throughout a child's life, and may exclude
them from being able to take preventative measures in relation to any health
It was also suggested by one submitter that the register should be
publicly accessible, to enable potential recipients to check how many families
each donor has assisted, prior to deciding whether or not to use that donor.
submitters and witnesses supported the establishment of a donor registry model
that also enables donor siblings to contact each other, similar to the Donor
Sibling Registry in the United States of America. Ms Cheryl Fletcher of SMC
Australia emphasised the benefits that children may have from having contact
with their siblings:
[t]here are quite a few people around the country where the
siblings meet at birthdays and at Christmas, and they love that extended
family. That is the benefit of a register too.
I0T45Pratt, Sen Louise0unknown45unknown1Ms Fiona Hearne,
also of SMC Australia, advised the committee:
[m]y daughter is in touch with one of her siblings. Our
clinic has always given us a list of the sex and the year a child was born...A
month or so ago I got a list of all the birth dates and the sex of the children
born from our donor. That is really unusual. I am hoping that it becomes a bit
more of a standard. We know the number of siblings but, at the moment, if my
daughter decides that she wants to be put in touch with siblings the clinic is
not interested in helping us until she is at least 18.
The DCSG suggested that donor conceived people and the
children of donors should be able to access the year of birth and the sex of all
of their half-siblings or full siblings. It also suggested that donor conceived
people, their half and full siblings, and the children of donors should be able
to share information or make contact with each other on a voluntary basis
through a register. At the public hearing in Sydney,
Mrs Leonie Hewitt of the DCSG spoke of her eldest child's
[w]e talk a lot about the donors and making contact with
them, but in the case of our eldest child there is no donor to contact. For her
there needs to be a register for the half-siblings to make contact. There is
nothing in place for them to meet those half-siblings.
Mr Adam Quinlivan, a donor conceived person, also proposed that
different sets of parents who used the same donor should be able to contact
each other, to allow half‑siblings to meet while they are children.
Retrospective operation of the
The committee received evidence both in support of, and against, the
retrospective operation of a national register.
Arguments in support of a
retrospective national register
A number of submissions were in favour of retrospective disclosure of
For example, Dr Sonia Allan advocated providing donor conceived people with
access to all identifying and non‐identifying information that is
held by clinics, hospitals or doctors, regardless of when conception took
Further, the Victorian Infertility Counsellors Group submitted:
[u]p until the [Assisted Reproductive Treatment Act 2008 (Vic)],
fertile women had to travel interstate to seek treatment and did therefore not
come under Victorian legislation. These women and their children therefore do
not have the same access to information about their donor origins as do donor
conceived offspring in the rest of the Victorian community. These women find it
particularly difficult not to be able to provide their children with up to date
and accurate information about their donor, often only having a few lines of
information to share with their child. A retrospective national register would
assist in rectifying this inequality.
In support of retrospective release of donor's identifying information,
many donor conceived people who made submissions to the inquiry noted that they
were never a party to the secrecy agreement with the donor, and that they
should be entitled to know information about their own genetic history.
TangledWebs argued that the rights of a donor conceived child to
information must prevail over the rights of the donor to anonymity:
[t]he child cannot have his or her rights limited by an implied
contract to which they were not a party.
Some submissions suggested that all past donors could be re-contacted to
see whether they are now willing to be identified, as it is not necessarily the
case that past donors wish to remain anonymous.
The DCSG submitted that a number of former sperm donors had sought out the DCSG
to discover the results of their donations.
The DCSG quoted from a former sperm donor who stated:
I was a sperm donor during 1997-1998. [M]y donations were
during the period when [d]onors had to sign away any future contact. This was a
condition of participation and I only wanted to help people – but at the back
of my mind was the hope that the rules would change to allow the resultant
children to trace their donor fathers, if they wished to do so [footnote
Similarly, Mr Michael Linden, who donated sperm anonymously in the late
1970s, argued that it is wrong to necessarily assume that donors do not care to
know whether their donations resulted in any offspring:
[f]rom the donor's perspective, the fundamental lie is, that
apart from being the source of a much-prized commodity, once his job is done he
simply doesn't count.
And worse, by some perverse corollary, with regard to the
fate of his children, it is assumed that he really doesn't care.
Ms Robyn Bailey of SMC Australia emphasised the importance of
counselling in cases where anonymous donors may be reluctant to provide
...it would be good if there was a staggered counselling
process where donors could go away and have some counselling, and mull it over
for a year or so. I do not think there is a need to rush the retrospective
register. I do not agree with anonymous donors being dragged out immediately
and forced to meet. That would be against the interests of all parties
Mr Richard Egan of FamilyVoice Australia indicated that his organisation
supported legislation mandating retrospective disclosure of donor details:
[t]hat legislation would require a national register because
you need to collect the data before clinics go out of business. Some of it will
be very patchy going back to the 1970s and so on, but we need to get that
information into a central registry before it is too late. Some people may not
start looking for their donor father until they are 30 or 40, so these things
come up at different times in people's lives. So: [it is our view that there
should be] an absolute right to know.
Mr Egan also commented that, if legislation establishing a national
register was retrospective, contact vetoes could be put in place the way they
are in adoption cases:
[n]o-one wants to force themselves on someone else, but they
do have a right to know where they come from, who they are, who their relatives
are and so on. That should include the ability to track donor siblings so you
know who your brothers and sisters are. That seems to me a fundamental human
right. That is the 'right to know' stuff.
Miss Lauren Burns concurred with this view:
[a]fter donor-linking and counselling has been supplied by
the intermediary Authority, donor conceived people should be permitted to apply
for identifying information about their donor, but be required to comply with any
contact vetoes placed by the donor.
Analogy with adoption
Drawing an analogy with adoption, the Victorian Adoption Network for
Information and Self Help Inc (VANISH) noted that, despite the initial anxiety
surrounding the retrospective release of information regarding adoption, it is
now well accepted that it is normal for adopted people to want information
about their birth parents.
The committee notes that all states and territories have legislation which
sets out the rights that adopted people have to information about their birth
parents. Appendix 2 to this report outlines what information is available to
adopted people in each state and territory and at what age.
All state and territory legislation provides adopted people with the
right to identifying information about their biological parents, including
their original birth certificate. However, legislation is not consistent
between states and territories and, additionally, not all adoption legislation
in Australia is retrospective. For example, in South Australia and Queensland,
birth parents and adopted people may veto the release of identifying information,
and any contact, if the adoption was finalised prior to the commencement of the
relevant legislation in those states.
Arguments against the retrospective
operation of a national register
The committee also received a number of submissions that did not support
retrospectively releasing identifying information about anonymous donors
because, in the past, sperm donors often signed a contract which assured the
donor of anonymity.
For example, the Fertility Society suggested that retrospectivity would be a 'grievous
violation' of the privacy of donors who previously entered into such
confidential agreements in good faith.
The Office of the Information Commissioner Queensland agreed:
...if donors provided sperm or eggs on the understanding that
their identities would remain confidential, that should not be overridden by
any new laws without evidence that the presumptions of benefit are shown to be
erroneous or that any detriment that is shown to arise overrides the benefits
of the policy to an extent where it becomes desirable to change the rules.
Similarly, the Canberra Fertility Centre advised:
[we are] emphatically opposed to any retrospective
legislation regarding disclosure of identifying information, as this would seem
unfair to donors who donated under the impression that they would remain
anonymous. It may also be devastating to a child or the recipient parents if
their attempt at contact with the donor was rebuffed.
One submitter, who had been a donor in the late 1980s, strongly opposed
the retrospective release of identifying information about himself.
In his submission, he stated that he had signed a contract which provided that
he 'would have no legal rights as a donor' and would have 'total anonymity with
no legal obligation to the normal parents and their child'.
Although he donated for altruistic reasons, he also advised the committee that
when the law changed in Victoria to provide greater access to information by
donor conceived individuals, he ceased donating because he did not want to be
This submitter had provided non-identifying information about himself
and his family, including photographs of family members, to the Victorian
Voluntary Register, written a letter to any child that may have been conceived
as a result of his donation, explaining why he wished to remain anonymous, and
offered to be contacted should a medical emergency arise where the child needed
a biological parent to provide an organ donation, for example.
Noting that he had his own children, he advised the Registrar of the
Voluntary Register that:
[m]y wife and I have had many debates about the wisdom of
revealing my identity and the possible flow on effects to our family, friends,
the donor conceived children and their natural parents. After much agonizing we
have decided on balance that it is for the best if I maintain my silence about
my IVF involvement and accordingly I ask that my identity continues to be
protected by your department.
The Western Australia Department of Health raised some issues which
would require further consideration in relation to a national register covering
retrospective release of identifying information:
[f]or example, in terms of the clinics, it could be said that
health professionals are under a legal and ethical duty not to disclose
confidential information concerning a patient which has been identified in the
course of their professional attendance upon that patient. That legal duty may
arise in contract or in equity. A third party who comes into possession of
confidential information which he or she knows is confidential falls under an
obligation not to pass that information on to anyone else.
Campaign to increase awareness of
Submitters suggested that, if a national register is established, there
could be nationwide campaigns run to advertise the register, to encourage past
donors to come forward, and to raise awareness about donor conception more
The committee was advised during the public hearing in Melbourne that the
campaign run by VARTA, Time To Tell, had been very successful in raising
awareness of these issues.
Similarly, Ms Robyn Bailey of SMC Australia suggested:
...there could be national advertising of a register and
people could be invited to come forward and the public could be educated like
they have done very successfully in Victoria...We could inform the public about
the benefits for donor conceived offspring of knowing their donors and
encourage past donors to come forward. We could search electoral rolls. There
are many things we could do in a staggered and considered way, not rushing into
it. I think that would be of great benefit to the families and the donors.
However, the Public Interest Law Clearing House (PILCH) suggested that,
while there is a voluntary register in Victoria for past anonymous donors,
there is an absence of widespread knowledge of its existence. This means that
only very limited information is available about donor treatment procedures which
occurred before 1998.
Opposition to the establishment of a national register
The Fertility Society did not support the establishment of a national
register, with Associate Professor Peter Illingworth advising the
committee that, in his view, state and territory variations were only 'very
The Fertility Society suggested that reform of donor conception practices would
be best made by further development and refinement of the existing local state‑based
systems, and that there is no evidence that a national approach will provide
significant advantages in this very difficult area.
In addition, Dr Martyn Stafford-Bell of
the Canberra Fertility Centre stated at the Canberra public hearing that he was
'completely opposed to a register of donor conceived
He explained that, in his view, state and territory and federal registers do
'no appreciable good and certainly no good over and above that which is
presently being done' by clinics.
Some submissions argued that, even if no national body or register is to
be created, mandatory requirements should be developed and enforced for clinics
in relation to how they record and maintain donor data, and how they facilitate
contact between donors, recipients and donor conceived people.
Similarly, regardless of whether or not a national register is established,
many submissions suggested that all clinics should increase the amount and type
of information they collect.
As noted earlier in this report, the type of information currently provided can
range from a brief physical description to a number of personal
characteristics, interests and family history.
The establishment of a voluntary register was supported by the majority
of submitters who commented on the issue of a register.
A voluntary register was viewed as being particularly beneficial in
circumstances where records have been destroyed or in order to locate
If any national register was not made retrospective, a voluntary register was
also seen as a way to enable donors who may have donated anonymously in the
past to identify themselves.
The Fertility Society supported the establishment of 'voluntary
retrospective registries' including in states which do not currently have registries.
Some submissions further proposed that, where records no longer exist or cannot
be accessed, a voluntary register should also contain a DNA database and
testing facility, as DNA testing would be the only way to accurately link
donors and donor conceived people.
For example, Mr Damian Adams stated that a DNA register should be established 'to
allow those with no records or records that have been destroyed the ability to
connect with their biological family'.
There were suggestions that the database could be similar to the United
Kingdom's DonorLink service.
In this context, the DCSG argued that donor conceived people who need to
use DNA testing to obtain a match with a donor because of the destruction of
records must not incur a charge for such a service.
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