CHAPTER 2 - Regulation of donor conception practices
2.1
This chapter provides a summary of past and present legislative and
regulatory frameworks in place across Australia in relation to donor
conception. It also considers concerns raised during the inquiry about the
existing legislative and regulatory frameworks.
Introduction
2.2
As the Commonwealth has not enacted legislation to regulate donor
conception practices, such practices are regulated by the states and
territories. Only four states – Victoria, South Australia, Western Australia
and New South Wales – have legislation specifically governing donor conception.
In states and territories where there is no legislation regulating donor
conception practices, the National Health and Medical Research Council's (NHMRC)
2007 Ethical Guidelines on the Use of Reproductive Technology in Clinical
Practice and Research (NHMRC Guidelines)[1]
apply. Clinics undertaking ART practices are accredited by the Reproductive
Technology Accreditation Committee (RTAC) of the Fertility Society of Australia
(Fertility Society).
2.3
As a result, there are significant differences in the approach taken
throughout Australia to the practices of donor conception, the requirements for
recordkeeping of donor conception practices and the provision of information to
donor conceived people, the parents of donor conceived people and donors.
Commonwealth's role in regulation of donor conception
2.4 The Commonwealth's role in the regulation of donor conception practices
is considered below.
Background
2.5
At a meeting of the Council of Australian Governments (COAG) in
April 2002, COAG agreed that the Australian Government and state and
territory governments would work towards developing uniform legislation across
Australia to standardise the treatment of human cloning and regulate the use of
excess ART embryos.[2]
The Arrangements for Nationally‑Consistent Bans on Human Cloning and
Other Unacceptable Practices, and Use of Excess Assisted Reproductive
Technology Embryos provide:
11. Accreditation by the Reproductive Technology
Accreditation Committee (RTAC) of the Fertility Society of Australia should
provide the basis for a nationally-consistent approach to the oversight of ART
clinical practice in Australia, noting that compliance with the NHMRC/AHEC [Australian
Health Ethics Committee] Ethical Guidelines on ART is a key requirement of RTAC
accreditation.
12. Individual jurisdictions may choose to mandate RTAC
accreditation in legislation or supplement requirements for RTAC accreditation
with an additional layer of oversight (for example, through a system of
licensing or accreditation of ART service providers).[3]
2.6
In January 2009, the Standing Committee of Attorneys-General (SCAG), the
Australian Health Ministers' Conference and the Community and Disability
Services Ministers' Conference Joint Working Group considered a national model
to harmonise the regulation of surrogacy.[4]
The discussion paper for this process briefly considered donor conception:
It is important to recognise the right of a child to know
their genetic heritage. The mechanism for securing appropriate access for the
child and other parties to relevant information about the surrogacy arrangement
and donors (such as, for example, by the establishment of a national donor
information register), should be determined in a consistent manner with donor
registers relating to ART generally.
It is proposed that a separate paper containing detailed
proposals will be developed jointly with Australian Health Ministers'
Conference and Community and Disability Services Ministers' Conference officers
for consultation at a later stage.[5]
2.7
In April 2009, SCAG agreed to develop a discussion paper on a national
model for the registration of donors, in consultation with Health and Community
Services Ministers.[6]
However, during the course of the current inquiry, the Attorney‑General's
Department (Department) advised that it 'is seeking the Attorney‑General's
views on the involvement of Health and Community Services Ministers before the
matter is placed on the SCAG agenda for any further consideration'.[7]
The issue was not discussed by SCAG at its meeting on
10 December 2010.[8]
2.8
The Department also advised that the 'working group would need to
consider the existing regulatory framework and legal issues relating to donor
registration'.[9]
The Department observed that, currently, there is 'no consistency in the
regulatory framework for the registration and record‑keeping practices
relating to information about conception donors', nor in relation to 'the
manner and form in which information is made available to conceived
individuals'.[10]
Relevant Commonwealth legislation
2.9
There does not appear to be a specific head of Commonwealth legislative
power which would clearly support comprehensive national legislation to
regulate donor conception, and the Commonwealth has not enacted specific
legislation to regulate these practices.
2.10
The Attorney-General's Department declined to provide any relevant
advice to the committee with respect to whether there is a constitutional head
of power which would enable it to legislate in this area:
It has been the longstanding position of the [Department],
under successive governments, that it does not provide legal or constitutional
advice to parliamentary committees...the Department has not in this case been
involved in any substantive consideration of constitutional and international
human rights law issues...The Department [is] therefore not in a position to
assist the Committee on these aspects of the Committee's inquiry.[11]
2.11
While the Attorney-General's Department advised that it was not in a
position to provide detailed advice on the issue, several articles in the
United Nations Convention on the Rights of the Child,[12]
including Article 3, Article 7.1 and Article 8.1 may be of relevance in this
context.[13]
2.12
The Convention sets out the political, social, economic, cultural and
civil rights of children: Article 3 requires the state to ensure that the best
interests of the child are the guiding principle in actions taken in relation
to children; Article 7.1 provides that each child is to be registered after
birth, has the right to a name, and to know and be cared for by his or her
parents; and Article 8.1 requires states to respect the right of a child to
preserve his or her identity, including their nationality, name and family
relations recognised by law.
Prohibition of Human Cloning for
Reproduction Act 2002 (Cth) and the Research
Involving Human Embryos Act 2002 (Cth)
2.13
There is, however, some Commonwealth legislation that is relevant in
relation to donor conception. In late 2002, the Federal Parliament enacted the Prohibition
of Human Cloning for Reproduction Act 2002 (Cth) and the Research
Involving Human Embryos Act 2002 (Cth) which prohibit human cloning for
reproduction and prohibit or regulate certain other practices involving human
embryos, to the extent that these matters are within Commonwealth
constitutional power.[14]
Relevantly to donor conception, the legislation prohibits the payment of
'valuable consideration' for donated ooctyes, sperm or embryos. However, it
permits the payment of 'reasonable expenses' incurred by the donor in
connection with supplying oocytes, sperm or embryos.[15]
2.14
To achieve coverage of the field, the states and the Australian Capital
Territory subsequently passed complementary legislation.[16]
To date, the Northern Territory has not passed complementary legislation.
Family Law Act 1975
2.15
Section 60H of the Family Law Act 1975 (Family Law Act) addresses
the status of children born as a result of assisted reproductive technologies (ART)
for the purposes of that Act. The section creates a relationship of parent and
child between the woman who gave birth to the child and her husband or de-facto
partner at that time. This is the case even if another man is the biological
father or another woman is the biological mother (under, for example, surrogacy
arrangements).
2.16
In cases where a child is born after being conceived by ART procedures
and there is uncertainty about that child's parentage, the Family Court of
Australia or the Federal Magistrates Court may be required to consider who that
child's parents are for the purposes of the Family Law Act. In a few cases,
judges of the Family Court have expressed concerns about the operation of
section 60H, and have suggested that this section be amended in order to
clarify the role that a non-biological party or a donor of gametes may have in
raising a child conceived by ART procedures (in cases where, for example, a
sperm donor to a lesbian couple wishes to have contact with a child).[17]
NHMRC Guidelines
2.17
The National Health and Medical Research Council (NHMRC) was established
under the National Health and Medical Research Council Act 1992 (NHMRC
Act). The NHMRC has a number of responsibilities, including:
-
...inquiring into and issuing guidelines and advice on a range of
matters relating to individual and public health, including health ethics;
-
...advising the minister in relation to the funding of health and
medical research across Australia; and
- ...advising the states in relation to its advice on matters
relating to individual and public health.[18]
2.18
Under the NHMRC Act, the Australian Health Ethics Committee (AHEC) is
the principal committee of the NHMRC. Through the AHEC, the NHMRC issues
guidelines and advice on matters of ethics in health research. The NHMRC also
has responsibilities under the Prohibition of Human Cloning for Reproduction
Act 2002 (Cth) and the Research Involving Human Embryos Act 2002
(Cth).
2.19
The NHMRC Guidelines set out ethical guidelines for clinical practice
and research involving ART. With respect to donor conception, the guidelines
describe appropriate practices in relation to:
- providing information and counselling to participants in ART;
- record keeping;
- the rights of donor conceived people to information about their
genetic parents and siblings; and
- limiting the number of people born using gametes from a single
donor.[19]
2.20
While the NHMRC Guidelines provide guidance, they are not legally
binding.[20]
However, in some cases, the NHMRC Guidelines are given legal effect through
Commonwealth or state and territory legislation, or through agreements with
Commonwealth bodies which require compliance with the guidelines.[21]
In order to be an accredited ART provider, clinics providing ART services must
comply with the NHMRC Guidelines.[22]
Provision of information under
NHMRC Guidelines
2.21
The NHMRC Guidelines specify that, in order to facilitate the exchange
of information between donors, recipients and donor conceived people, clinics
must have appropriate arrangements for data collection, data storage and
information release.[23]
Clinics are required to collect the following information from donors:
- name, any previous name, date of birth and most recent address;
- details of past medical history, family history, and any genetic test
results; and
- details of physical characteristics.[24]
2.22
The NHMRC Guidelines specify that ART clinics must provide gamete (that
is, sperm or oocyte) recipients with information 'that is relevant to the care
of their donor conceived offspring', including, at least, the following
information:
- details of past medical history, family history and any genetic
test results;
- details of the physical characteristics of the gamete donor; and
-
the number and sex of people conceived using the gametes donated by
the same gamete donor.[25]
2.23
The NHMRC Guidelines state that donor conceived people are 'entitled to
know their genetic parents'. Clinics must, on request, provide at least the
following information to donor conceived people (but only if they are 18 years of
age or have 'acquired sufficient maturity' to appreciate the significance of
the request):
- details of past medical history, family history and any genetic
test results;
-
identifying information about the gamete donor; and
- the number and sex of people conceived using the gametes provided
by the same gamete donor, the number of families involved, and any identifying
information that these siblings have consented to being released.[26]
2.24
In relation to gamete donors, the NHMRC Guidelines state that donors are:
...entitled to some information about the recipients of their
gametes and the offspring born (in particular, to prepare them for future
approaches by their genetic offspring). Clinics may provide gamete donors, on
request, with nonidentifying information about gamete recipients, including the
number and sex of persons born.[27]
Reproductive Technology
Accreditation Committee
2.25
The Reproductive Technology Accreditation Committee (RTAC) is a
committee of the Fertility Society of Australia (Fertility Society), which is the
peak industry body representing the ART sector in Australia. RTAC operates an
accreditation program for ART providers in all states and territories. To
become an accredited ART provider, clinics must comply with the NHMRC
Guidelines and the RTAC Code of Practice.[28]
The RTAC Code of Practice sets minimum professional and laboratory standards
for clinics offering fertility services.[29]
Compliance with the RTAC Code of Practice is mandatory for clinics which
provide ART treatment involving human embryos created in-vitro.[30]
2.26
Reviews of clinics are undertaken by an independent certification body
approved by the Joint Accreditation System of Australia and New Zealand (JAS‑ANZ).[31]
Clinics are accredited each year on 'critical criteria' and every three years
on 'practice criteria'.[32]
State and territory regulation of donor conception
2.27
A brief summary of relevant legislation and practices in the states and
territories is provided below. Appendix 1 to this report contains a table which
also includes information relating to the various state and territory
legislative regimes.
Victoria
2.28
Victoria has the longest established and most comprehensive donor
conception legislation of the states, with ART having been regulated there since
1988. The Infertility (Medical Procedures) Act 1984 (Vic) (1984 Victorian
Act) included requirements relating to counselling, assisted insemination and
donor expenses.[33]
Under that Act, information that identified any
person could be released with the consent of the person about whom it related.
2.29
In 1995, the 1984 Victorian Act was replaced
by the Infertility Treatment Act 1995 (Vic) (1995 Victorian Act) which
established the Infertility Treatment Authority (ITA) (which has since become
the Victorian Assisted Reproductive Technology Authority (VARTA)). The
1995 Victorian Act provided more comprehensive
requirements in relation to counselling, availability of information for donors
and donor conceived people, as well as requirements in relation to donor
registers. The 1995 Victorian Act enables donor conceived people, conceived
after 1 January 1998, when they reach 18 years of age, to access information
about their donor, subject to counselling requirements.
2.30
In 2008, the 1995 Victorian Act was replaced by the Assisted
Reproductive Treatment Act 2008 (Vic) (2008 Victorian Act). The 2008
Victorian Act implemented aspects of a 2004 review of the 1995 Victorian Act
relating to, among other things, assisted insemination, donation of gametes,
parentage and access to information.[34]
Two of the guiding principles of the 2008 Victorian Act are that:
[t]he welfare and interests of persons born or to be born as
a result of treatment procedures are paramount...[and]
Children born as a result of the use of donated gametes have
a right to information about their genetic origins...[35]
2.31
Under the 2008 Victorian Act, information (such as full name, date of
birth and medical history) about donors, and women who have received treatment
using donated oocytes, sperm or embryos is maintained on two registers. These
registers are called the Central Register (Vic) and the Voluntary Register
(Vic).
2.32
The registered clinic or doctor who provides the donor conception procedure
is required to supply certain information to the Central Register (Vic). Information
on the Central Register (Vic) is classed as either identifying or
non-identifying information.[36]
If it is the former, the registry must obtain the consent of the person to whom
the information relates before releasing it, and must refer the applicant to a
counselling service. If it is the latter, the registry may release it directly
to the applicant. The following persons are eligible to apply for access to
information held on the Central Register (Vic):
- a donor conceived person;
- a parent of a donor conceived person;
- a descendant of a donor conceived person; and
- a donor.
2.33
However, if the donation in question was given and used before 1998, no
information will be provided to the donor conceived person, unless the donor
has lodged their information on the Voluntary Register (Vic). If the donation
was given and used between 1988 and 1997, the donor's consent is needed to
provide information on the Voluntary Register (Vic) to the donor conceived
person.
2.34
The following people may lodge information and apply for access to
information held on the Voluntary Register (Vic):
- a donor conceived person;
-
a parent of a donor conceived person;
- a relative of a donor conceived person;
-
a descendant of a donor conceived person;
- a donor; and
- a relative of a donor.
2.35
Where the Voluntary Register (Vic) contains information that is
requested, that information will be released if the person to whom it relates
has consented to that release.
2.36
On 23 June 2010, the Victorian Legislative Council referred an inquiry
into donor conception to the Victorian Parliament's Law Reform Committee. That
inquiry specifically focused on legal and other issues in relation to donor
conceived people being given access to identifying information about their
donors and donor conceived siblings, regardless of when the donation was made.
The inquiry was also reviewing the impacts of the transfer of the donor
registers held by the ITA to the Registrar of Births, Deaths and Marriages.[37]
The Law Reform Committee tabled an interim report on 15 September 2010, in
which it made two recommendations,[38]
but the inquiry lapsed with the prorogation of the 56th Victorian
Parliament on 2 November 2010.
New South Wales
2.37
The Assisted Reproductive Technology Act 2007 (NSW) (NSW Act)
commenced on 1 January 2010 and aims to:
...assist people conceived using donated gametes (ova and sperm),
to identify their donor. This legislation gives donors and their offspring the
opportunity to access this information in a structured way.[39]
2.38
One of the objects of the NSW Act is to protect the interests of:
- a person born as a result of ART treatment;
- a person providing a gamete for use in ART treatment or for
research in connection with ART treatment; or
- a woman undergoing ART treatment.[40]
2.39
The NSW Act establishes a central register of information about donors
and donor conceived people. ART providers are required to supply both non‑identifying
and identifying information to the register, including:
- the donor's full name, address, date and place of birth;
- the donor's ethnicity and physical characteristics;
- any medical history or genetic test results of the donor and the
donor's family that are relevant to the future health of:
- a person undergoing ART treatment involving the use of the donated
gamete;
- any donor conceived person born as a result of that treatment;
and
- any descendants of any such donor conceived people;
-
the name of each ART provider who has previously obtained a
donated gamete from the donor and the date on which the gamete was obtained;
and
- the sex and year of birth of any child born using oocytes or
sperm provided by the donor (donors can provide updated information to the register
if they choose).[41]
2.40
As in Victoria, the NSW register is not retrospective, and can be
accessed only by people who were conceived after 1 January 2010 (or their
donors).
2.41
For people conceived before 1 January 2010 (or their donors), the NSW
Act establishes a voluntary register. A person is only able to access
information from the voluntary register if the person to whom the information relates
has consented.[42]
South Australia
2.42
In South Australia, donor conception is regulated by the Reproductive
Technology (Clinical Practices) Act 1988 (SA) (SA Act).[43]
Significant amendments to the SA Act commenced on 1 September 2010, and section
4A of the SA Act now provides:
[t]he welfare of any child to be born as a consequence of the
provision of assisted reproductive treatment in accordance with this Act must
be treated as being of paramount importance, and accepted as a fundamental
principle, in respect of the operation of this Act.
2.43
Under the amended SA Act, the Minister is empowered to:
- establish a donor conception register; and
- require people to provide information for the purpose of
preparing or maintaining the register.[44]
2.44
However, the donor conception register will not record information about
ART treatment which occurred before the amendments commenced.[45]
2.45
Information required to be provided under the SA Act includes:
- the donor's full name and nominated contact address;
- the full name and nominated contact address of the person to whom
assisted reproductive treatment using the donor's human reproductive material
was provided;
- the full name of any child born as a consequence of such assisted
reproductive treatment (if known); and
- any other information required by relevant regulations.[46]
2.46
Under section 16 of the SA Act, clinics and doctors are required to
collect and keep information about ART procedures that is specified under the
regulations. The SA regulations provide that disclosure of identifying
information about a donor is permitted where the donor consents, or as required
or authorised by the NHMRC Guidelines.[47]
2.47
The regulations also provide that any clinical practice involving human
reproductive material must be undertaken in compliance with the relevant
requirements of the NHMRC Guidelines.[48]
Western Australia
2.48
Commencing in 1993, the Human Reproductive Technology Act 1991 (WA)
(WA Act) regulates all ART practices in Western Australia.
2.49
One of the objects of the WA Act is to ensure:
...that the prospective welfare of any child to be born
consequent upon a procedure to which this Act relates is properly taken into
consideration...[49]
2.50
The WA Act requires complete medical records about the donor and the
treatment cycle to be made and stored in clinics. Further, the WA Act places an
obligation on the Commissioner of Health to establish and maintain registers of
information about all types of ART procedures, including donor conception,
which must include specified information about donors and recipients. Clinics licensed
under the WA Act must provide information to these registers.
2.51
The WA Act also establishes the Reproductive Technology Register.
Information about all ART treatments carried out in Western Australia is
included on the Reproductive Technology Register.
2.52
Stored information may include the donor's physical characteristics, family
background, level of education, interests, and personality. However, information
about donor conceived people is more limited and is not updated.[50]
2.53
In terms of access to donor information in Western Australia:
...with amendments to the [WA] Act in December 2004, donor
conceived persons upon reaching the age of 16 years having undertaken approved
counselling have a right to access identifying information about the donor. As
a result of these changes to legislation only those donors who consent to their
identifying information being released to donor conceived persons upon reaching
the age of 16 are able to donate human reproductive material.[51]
2.54
In relation to non-identifying information, the WA Act allows parties to
a donation to access such information from a clinic or from the register.[52]
2.55
As with other states that have legislated in this area, the WA Act is
not retrospective. For people who were donor conceived prior to 1993 (or their
donors), the only potential source of information is the clinic where the treatment
was carried out.[53]
Western Australia has also established a voluntary register to assist donor conceived
people who wish to find out about their genetic origins and donors who want to
know if a child has been born as a result of their donations. Identifying
information on the voluntary register is only provided where the person to whom
the information relates has given written consent.[54]
Other states and territories
2.56
There is no specific legislation regulating donor conception in
Queensland, Tasmania, the Northern Territory or the Australian Capital
Territory. For the regulation of standards and practices in relation to ART,
these jurisdictions rely on:
- the NHMRC Guidelines; and
- the certification of ART providers by the Reproductive Technology
Accreditation Committee (RTAC) of the Fertility Society of Australia (Fertility
Society).
Concerns about regulation of donor conception practices
2.57
During the course of the inquiry, a large number of submitters and
witnesses expressed significant discontent with the current regulation of donor
conception by the states and territories.[55]
2.58
Three key concerns were identified, namely:
- inconsistent state and territory approaches to the information
that donor conceived people, their families and donors may access;
- inadequate regulation in the states and territories where there
is no specific donor conception legislation; and
-
the lack of national regulation and a national framework to:
- ensure consistency;
- prevent donors and recipients being able to travel between states
and territories to donate or access services; and
- regulate the importation of donor gametes and embryos into
Australia.
Inconsistency in approaches to availability
of information
2.59
A key concern raised by submitters was the differences in access to
information for donor conceived people on the basis of the state and the year
in which they were conceived.[56]
Monash IVF, which operates clinics in both Victoria and Queensland, stated:
[at] this point...the rights of a donor conceived person in
Victoria born after 1998 compared to someone born in Queensland [are] vastly
different with the Victorian person having the legal right to identifying
information about their donor...
Due to changes in legislation in Victoria there are some
families with donor conceived children who were born under different iterations
of the legislation therefore each child/person [has] different sets of rights
in terms of what information that person is entitled [to] about their genetic
origins.[57]
2.60
In addition, the Rainbow Families Council stated:
...some children in the one rainbow family have been
conceived at different times in different clinics across different states or
territories using donors with different identity‐release provisions. The
past practice has created a confusing and often upsetting situation for parents
and their donor‐conceived children when, for
example, only one child has access to the identifying information about
their donor while the other child does not.[58]
2.61
Differences in legislation between the states and territories can result
in parties accessing gametes or embryos from different states in order to take
advantage of a more favourable release of information. Ms Karen Boyd – a mother
of donor conceived children – explained her experience in which donors donated
an embryo in one state and made it available in another state, specifically to
enable the donor conceived child to access information about those donors:
[m]y son was born in 1999 and we have both non‑identifying
and identifying information available to us when he is 18 years old, thanks to
the Victorian Registry. His embryo was conceived in NSW but his donors wanted
their information available to a child if a child was born from their donation.
So the embryo was made available to [us in Victoria] as Victoria at the time
was the only state that had a registry available.[59]
2.62
As well as variations in the amount of information able to be released
depending on where and when a child was conceived, there are differences in the
non‑identifying information provided about donors to recipients. Solo
Mums by Choice (SMC Australia) submitted:
[m]embers report great inconsistency regarding information
provided about sperm donors. This ranges from a brief physical description
regarding height/hair/eye colour to several pages of information relating to
the donor's physical characteristics as well as medical history,
interests/personality and family history. In some cases even minimal
information is not provided until after a pregnancy is confirmed. It is not
clear what steps clinics take to ensure that information provided by donors is
accurate or complete.[60]
Regulation in jurisdictions with no
specific legislation
2.63
Particular concerns were expressed about the states and territories
where clinics are only required to comply with the NHMRC Guidelines and the
RTAC Code of Practice. The Donor Conception Support Group of Australia (DCSG)
argued that the NHMRC Guidelines are insufficient, particularly because the RTAC
clinic accreditation processes are not transparent. As a result, it is not
clear that clinics are complying with the NHMRC Guidelines.[61]
2.64
One submitter advised the committee that when she conceived her child by
donor conception, she was initially told that the donor was an identity‑release
donor but later found out, after conceiving, that the donor was a non‑identity
release donor.[62]
However, as noted earlier in this report, the NHMRC Guidelines do not allow for
anonymous donations.[63]
2.65
Similarly, Dr Sonia Allan, a legal academic and researcher in the area
of donor conception and the use of ART, noted that there is no evidence that
the NHMRC Guidelines are implemented in practice. Specifically, there is no
oversight of clinics to ensure identifying information is made available to
donor conceived people.[64]
The DCSG has likewise argued that clinics are not making sufficient efforts to
encourage past donors to place their information on voluntary registers, as
required by paragraph 6.1.3 of the NHMRC Guidelines.[65]
2.66
It was suggested by Miss Lauren Burns, a donor conceived person, that a
way to address the apparent lack of transparency about the accreditation
process would be to:
...[have] an ombudsman for assisted reproductive treatments
similar to, say, the banking or insurance industries so it gives people a way
that they can investigate complaints.[66]
2.67
SMC Australia suggested that all clinics should be audited
by a truly independent body and should be accountable to a government authority.[67]
2.68
However, at the public hearing in Canberra, Dr Martyn Stafford-Bell from
the Canberra Fertility Centre explained that, in his view, the NHMRC Guidelines
are enforceable. This is because, if a clinic does not provide evidence of
compliance, the RTAC is able to recommend to the Australian Government that the
clinic's patients do not receive Medicare benefits until the clinic becomes
compliant.[68] Dr Stafford-Bell contended that the NHMRC
Guidelines are 'perfectly adequate', but that '[i]t is a question of enforcing
them'.[69]
He advised the committee that he is aware of at least two clinics which have
had their accreditation withdrawn or which have been sanctioned for failure to
comply with the NHMRC Guidelines.[70]
2.69
Dr Clive Morris from the NHMRC advised that the NHMRC Guidelines 'contain
a range of requirements which are worded as 'should' or 'must', but they do not
contain sanctions. It would be up to whichever body was responsible for
regulation to apply sanctions'.[71] He indicated that the NHMRC's role is 'not
to police the [NHMRC] Guidelines' and acknowledged that the NHMRC Guidelines
are not enforceable under law.[72]
Support for uniform legislation to ensure consistency
2.70
Several submissions supported the development of uniform legislation to
regulate donor conception, in order to ensure that donor conception practices
and access to information for donor conceived people are consistent across
Australia.[73]
Ms Kate Dobby, who worked as the Registers Officer at the former ITA in Victoria, submitted that the fact that people
are currently able to cross jurisdictions to take advantage of more favourable
regulation 'makes a mockery of jurisdiction-based attempts to maintain records
of donor conception and the people born' and 'dilutes any attempt by one or
another jurisdiction to effectively regulate practices'.[74]
2.71
The Victorian Infertility Counsellors Group similarly argued that the
RTAC Code of Practice and the NHMRC Guidelines have limited capacity to ensure uniformity,
because there is little scope for these bodies to monitor practices across
Australia and implement consequences for non‑compliance. In particular:
[a] national legislative framework would provide that extra
step in ensuring that all states have a uniform approach to ensuring equitable
access to treatment, protection of the rights of all parties involved in donor
arrangements and a systemised approach to data collection, information
provision and counselling and related support.[75]
2.72
The submission from Mrs Leonie and Mr Warren Hewitt, parents of
donor conceived children, indicated that the lack of consistent legislation
across Australia enables some donors to donate in a number of states.[76]
This has resulted in one of their donor conceived children having 31 half‑siblings.[77]
2.73
The Canberra Fertility Centre supported the development of uniform
legislation involving donor conception throughout Australia, including legislation
to limit the number of families who achieve a live birth using gametes donated
by a single individual.[78]
However, the Centre noted that:
[t]he demand for donated gametes in Australia far exceeds the
supply, and therefore we recommend that any regulatory or legislative changes
regarding donor conception should take the rights and preferences of donors
into consideration, in order to encourage donation, thereby allowing more
Australians affected by infertility access to treatment with donor gametes.[79]
2.74
Some submitters encouraged the development of national legislation based
on the Victorian model.[80]
The committee notes that it is also possible that the NHMRC Guidelines could be
used to provide a starting point for the development of national legislation in
relation to the rights of donor conceived individuals.
Commonwealth legislation
2.75
Some submitters strongly supported the Commonwealth legislating to
regulate donor conception as a way to address inconsistencies between the states
and territories.[81]
Others were concerned that having state or territory legislation, as well as
federal legislation, could create a significant regulatory and compliance
burden.[82]
Support for Commonwealth legislation
2.76
Mr Damian Adams suggested that the Australian Government
should legislate to ensure 'uniformity in the provision and control of the
practice' of donor conception to ensure that donor conceived people across
Australia are treated in the same way.[83]
2.77
The DCSG expressed its strong support for Commonwealth action:
[t]he Federal [G]overnment has, in the past, justified their
inaction in the area of donor conception by saying that it is a health matter
and only the states have the jurisdiction to legislate in this area. We would
put forward three points against this. Firstly, health departments are not the
best place for legislation to do with donor conception. The issues that
families and individuals involved in donor conception face are social [and]
emotional for the most part; they deal with lack of genetic and social heritage
very much like adoption. Secondly, most states have declined to do anything
about donor conception, [a]nd thirdly the Federal Government has already set a [precedent]
for legislating in the health area with its Prohibition of Cloning for
Reproduction and Research Involving Human Embryos Acts.[84]
2.78
Similarly, Ms Kylie Dempsey, who is a donor conceived person, submitted
that regulation and legislation for donor conception practices is inconsistent in
Australia and that this has had an effect on donor conceived people.[85]
In particular, she expressed concern about the Australian Government's lack of
involvement when, in her view, donor conception practices require further
regulation to prevent 'heartache in its clients' and 'medical emergencies in
donor conceived children who don't have medical histories of their donor'.[86]
Constitutional head of power
2.79
In relation to whether a constitutional head of power exists to allow
the Commonwealth to legislate in this area, Dr Sonia Allan suggested that the external
affairs power could be used to 'protect existing records,...to require
the...release of information to donor-conceived individuals about their genetic
heritage [and to set] up a national database which would provide for
consistency across the nation in relation to data retention and release'.[87]
Dr Allan also noted that Australia has obligations under international treaties
to protect children, and to ensure that children are not denied the right to an
identity or denied the ability to have a relationship with their parents.[88]
2.80
As examples, Dr Allan cited the Convention on the Rights of the Child,
particularly Article 2 (to prevent discrimination against children), Article 3
(best interests of the child to be a primary consideration in all actions of
the state involving the child), Article 7 (every child has a right to know and
be cared for by their parents), Article 8 (every child has a right to preserve
his or her identity) and Article 13 (child's right to freedom of expression).
Dr Sonia Allan also drew on Article 7 (all are equal before the law and
entitled to equal protection of the law) and Article 25(2) (all children should
enjoy the same social protection) of the Universal Declaration of Human Rights.[89]
Concerns about further regulation of clinics
2.81
IVF Australia, which operates in New South Wales, expressed concern
about the potential regulatory and compliance burden for clinics if there is
both state and Commonwealth legislation regulating this area.[90]
2.82
While most submissions supported further regulation of ART clinics, some
submitters noted that changes to state legislation have negatively impacted
upon them. These submitters were concerned that further changes may limit the
ability for people to access ART services. For example, the mother of a donor
conceived child in NSW commented that the introduction of the NSW Act had
created difficulties in seeking to have her female partner conceive a child
using sperm from the same donor.[91]
2.83
In addition, some evidence suggested that further regulation of
fertility clinics has the potential to drive donors into unregulated spheres.
One submitter noted:
[t]here are more Australian donors donating through
unregulated international internet web sites than there are in Australian IVF
clinics. Government regulations have totally driven donors away from regulation
and monitoring. Donors on these sites are not regulated by regulations covering
STD status, [f]ertility, [c]onsanguinity & contact between donors and
children.[92]
Regulation of private arrangements
2.84
A few submissions suggested that, in addition to regulating fertility
clinics, there was a need to regulate private arrangements involving donor
conception. This is despite perceived difficulties in relation to the
regulation of private arrangements.[93]
Dr Damien Riggs, a researcher in the field of sperm donation, suggested
that it is necessary to regulate private arrangements in order to:
- ensure all parties have adequately considered the consequences of
donor conception;
- provide legal protection to all parties;
- help prevent health risks arising from lack of appropriate
screening of sperm; and
- ensure donor conceived individuals are able to access information
about their donor.[94]
2.85
In relation to the final point, Dr Riggs noted:
[w]hilst the majority of the participants in my research
indicated willingness to be identified by children conceived of their donations,
such willingness cannot be relied upon, and certainly not 18 or more years
after the donation is made. Legislating for the recording of donor information
in private arrangements in a public registry that can be accessed by donor‑conceived
children after the age of 18 would thus help to protect the rights of such
children to access information about their genetic history at the very least.[95]
unknown27unknown1Regulation of international donations
2.86
Submitters and witnesses expressed concerns about the practice of using
donated gametes, particularly sperm, from overseas donors. However, there was
conflicting evidence about the extent to which importation of gametes and
embryos occurs in Australia.
2.87
Some submissions and witnesses suggested that donations from overseas
should be banned in Australia, because the geographical barriers make it more
difficult for a donor conceived person to establish a relationship with their
donor.[96]
2.88
For example, Mrs Caroline Lorbach of the DCSG raised objections to
all overseas donations:
[w]e have a problem with semen being imported–full stop.
Children have enough problems trying to find donors within this country let
alone having to cope with contacting another country. It just adds yet another
level of difficulty to an already serious problem.[97]
2.89
Mr Richard Egan, from FamilyVoice Australia, also opposed the
importation of sperm:
[i]n terms of importation from overseas, I think that has got
to be stopped. It is unjust to the child to have this dad in some foreign
country who in 18 years time they are going to have the alleged right to track
down.[98]
2.90
The Victorian Infertility Counsellors Group also suggested that the
importation of gametes or embryos from overseas should be banned where
information about the donor cannot be provided for relevant records and if the
donor cannot be counselled about, and consent to, donating within the
jurisdiction where his or her donation will be used.[99]
2.91
However, the Canberra Fertility Centre also noted the low level of sperm
donations in Australia relative to demand, and indicated that the majority of
donor treatment cycles it undertakes involves the use of donor sperm imported
from overseas.[100]
Dr Martyn Stafford‑Bell
advised the committee that his understanding is that most imported sperm comes
from the United States of America and that 'American clinics have stricter
guidelines than [Australia]'.[101]
Despite this, Dr Stafford-Bell indicated that he would not be concerned if
the NHMRC Guidelines were updated to better address issues that arise when
dealing with imported sperm.[102]
2.92
Conversely, Mr Lyle Shelton from the Australian Christian Lobby
noted his organisation's strong opposition 'to the importation of sperm and
other gametes because the regulatory system in the United States, in particular,
is fairly loose'.[103]
2.93
Associate Professor Peter Illingworth, from the Fertility Society,
advised the committee:
[i]t is not true to suggest...that the majority of donor
gamete treatment in this country is through the use of imported sperm. Most clinics
in Australia do not use sperm that has been imported from overseas.[104]
2.94
Associate Professor Illingworth also suggested that there may be
situations where imported sperm is of benefit. For example, there may be circumstances
where the parties have a particular ethnic background and it is difficult to
obtain sperm from a person with the same ethnic background:
...there are situations, particularly with ethnically diverse
families, where the use of imported sperm may be the only option couples have
to have a family. In deciding whether to use sperm that has been donated
overseas, clinics have to weigh up the interests of the couples in front of
them who [are] trying to have a family against the long-term interests of the
children who have been conceived from donor gametes.[105]
Prohibition of any form of donor conception
2.95
Some submissions and witnesses were entirely opposed to the practice of
donor conception. Mr Lyle Shelton, on behalf of the Australian Christian Lobby,
stated that 'ART or NRT should be limited to circumstances where the biological
parents [or close family members] are able to provide the gametes'.[106]
2.96
The Australian Christian Lobby argued that self-identity problems impose
such burdens on donor conceived children that donor conception should be prohibited:
[t]here should be a moratorium on all forms of donor
conception and surrogacy, because by intentionally fracturing parenthood before
the conception of the child, they necessarily impose intolerable burdens of
identity bewilderment on the child. Such procedures are never in the best
interest of the child to be conceived.[107]
2.97
At the Melbourne public hearing, Mrs Myfanwy Cummerford, a
person conceived using donor conception, stated that she does not support donor
conception 'until there is an agreed legislative position where the child that
comes into the world has the right to access and a relationship with their
biological father'.[108]
2.98
A former sperm donor, Mr Michael Linden, noted that, if he had the
choice again, he would never have become a sperm donor 'and thereby
relinquished [his] unborn children'.[109]
He noted that he now feels cheated and at times angry that he may never meet
some of the children conceived as a result of his donations:
[w]hat is most troubling about gamete donation is that it
purposely severs a connection of the sort that normally informs a person's
sense of identity...
...
To the parents, whether they would wish it or not, and
whether they disclose to their child or not, the child will always be the
donor's child. He is the father of that child. This is an inescapable
biological fact and the fundamental reason why the continuing practice of donor
insemination is a tragic if not a criminal mistake.[110]
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