CHAPTER 6 - Rights of donor conceived individuals
This chapter discusses what rights should be accorded to donor conceived
people, and in particular, considers:
- access to information about donors, including anonymity of donors
and non‑disclosure to donor conceived children that they were donor
- current concerns for donors, including issues relating to
self-identity, access to medical records and the importance of disclosure;
- the analogy with adoption;
- the annotation of birth certificates for donor conceived people;
- whether a 'rights' based approach is appropriate in this context.
Access to information about donors
Many of the issues of concern to donor conceived people arise as a
consequence of historical practices around donor conception. The two main
issues are the anonymity of donors, and the fact that many parents were often told
not to disclose to their children that they were donor conceived (and often did
not do so until their children were adults).
Anonymity of donors
Even in situations where records may exist about a donor, many donor
conceived people are unable to access these records as a result of past
commitments made to donors to maintain their anonymity.
Miss Narelle Grech, a donor conceived person, explained the personal impact
this has had on her:
I cannot begin to describe how dehumanising and powerless I
am to know that the name and details about my biological father and my entire
paternal family sit somewhere in a filing cabinet...with no means to access it.
Information about my own family, my roots, my identity, I am told I have no
right to know.
In those states that have enacted legislation governing donor
conception, (Victoria, Western Australia, South Australia and NSW), requirements
for providing identifying information about donors to donor conceived people are
not retrospective, meaning that only people who are donor conceived after the
enactment of the relevant legislation can have access to donor information
under the terms of that legislation. There are also differences in the state
legislative schemes, as discussed earlier in this report and as set out in Appendix
Further, by legislation not having a retrospective operation, this has,
in effect, provided donors with rights to anonymity if, when they donated, they
did so on the understanding that their donation was anonymous. In NSW, for
example, under the Assisted Reproductive Technology Act 2007 (NSW), the
NSW register can only be accessed by donor conceived people conceived after
1 January 2010. People conceived before 1 January 2010 are
only able to access information if the person to whom it relates has consented.
In Victoria, under the Assisted Reproductive Treatment Act 2008 (Vic),
if a donation was given before 1998, no information is available for the donor
conceived person unless the donor has lodged their information on the Voluntary
Register (Vic). As the Victorian Law Reform Committee observed during its
inquiry, 'some gametes donated prior to 1988 are still being used in donor conception
procedures', and people conceived now and into the future with these gametes
cannot access any information because donors were guaranteed anonymity at the
time of making the donation.
In her submission, Dr Sonia Allan pointed
to the inequity for donor conceived individuals arising from the inconsistent
approaches to access to information about donor conception.
She also submitted:
[i]t is difficult to justify a situation in which some people
born as a result of the use of ART have a right to access to information about
their biological parentage because they were conceived in a particular state at
a particular time, but those conceived in other states or territories or prior
to the introduction of legislation are not entitled and do not have access to
unknown78unknown1unknown78unknown1 At the public
hearing in Melbourne, Dr Allan stated:
believe, not just from a social perspective but also from a legal perspective,
that, once we recognise the right of donor conceived individuals to have access
to information about their genetic heritage, that recognition cannot be applied
only to a small subset of donor conceived individuals or people who will be
conceived via assisted reproductive technologies in the future. Once we make
that recognition, we need to apply that recognition to all donor conceived
Other submissions, such as that of the Rainbow Families Council, highlighted
how some siblings within the same family, who were conceived under different
regulatory approaches, have different rights to access information about their
Ms Marianne Tome of the Victorian Infertility Counsellors
Group argued that other people affected by donor conception more broadly should
also have access to information about donors, not just those who are donor
[w]e recognise the right of all donor conceived individuals
in Australia to have access to information about their biological parents and
genetic siblings. We also recognise the rights of recipients and donors to also
have access to such information.
Non-disclosure to children
The committee learned that in the 1970s and 1980s, particularly, parents
were often encouraged by doctors and clinics not to tell their children that
they were donor conceived. For example, the parents of donor conceived children
were told in 1982 that donor conception 'was a closed book that we were to tell
no one, including the child, of the roller coaster experience'.
Another mother of a donor conceived child who was born in 1979, still has not
told him that he is donor conceived:
[he] is now 30 years of age. He does not know the truth of
As time went by I began to have deep reservations about this
secret which we were keeping from him.
I felt that he had the right to know but I also knew that the
legislation would not allow me to get his records to pass on to my son.
I also felt that because my husband and I had divorced, I did
not want to tell him without my ex husband consenting. I did not want this to
be a trigger which may have caused damage to their relationship. I did approach
his father about this, but he did not want his son to know.
So a few more years went by.
Every few years the issue arises for me again and keeps
rearing its ugly head. There is a nagging feeling there that he has the right
to know. But then when I realise that he can't get access to his records, I
meet another stumbling block again, and the issue goes underground again for me.
And still I have not told him.
Some parents tell their children that they are donor conceived when they
become an adult.
Miss Lauren Burns discovered as an adult that she and her sister were donor
conceived, and described finding out in the following way:
[o]ne afternoon in...2005, when I was 21 and my sister 24, my
mother sat us down and said she had something to tell us. She sat on the
creased leather couch, eyes downcast, hands shaking softly. In an awkward
conversation she revealed the truth, that we were both donor conceived. Finding
out so late was a huge shock. My identity was splintered and the social and
biological aspects of parenthood carved up. I learned my biological father was
a vial of frozen sperm labelled C11.
For the next three years I didn't discuss being donor
conceived, but I thought about it a lot, almost every day. I mourned the human
face behind that vial, somebody I had never and would never meet. I wondered
about my missing kin, who they were, what they looked like and where their
interests lay. I empathised with people whose relatives have gone missing. They
don’t know if they are alive or dead, happy or miserable, and when, if ever,
they might see each other again. It is important to recognise that the impact
of the status quo is not benign. It can place children in an awful limbo. I
thought about carrying this burden for the rest of my life and I was afraid.
Dr Sonia Allan noted the difficulties associated with such an approach:
[s]imilar to adopted children wanting to meet their
biological parents, donor‑conceived individuals feel a strong need to
connect with their donor in order to obtain a fuller sense of self-identity. Of
major concern then is that individuals told late in life about their adopted or
donor-conceived status may experience psycho-social difficulties. For example,
where it is too late to meet their biological parents, such individuals may
experience a great sense of loss.
Current concerns for donor conceived people
As examined earlier in this report, the past requirement for anonymity
of donors underpins many of the current concerns held by donor conceived
individuals in relation to obtaining information about their genetic heritage.
Such information is important in order to reduce the risk of consanguine
relationships with unknown relatives, to be able to form meaningful
relationships with donors and half‑siblings, to have a more complete
sense of self‐identity, and for medical
Self-identity of the donor
The difficulties that donor conceived individuals may experience in
relation to accessing information about their donors mean that many do not know
the identity of their biological father, mother, or parents, and they may also be
deprived of non‑identifying information such as the cultural extraction
of their forebears. The DCSG submitted that donor conceived people have a need
for this information in order for them to complete their own sense of identity:
[i]t is a basic human right to know of one's origins. Every
person should have a right of access to information and to contact...those who
make up their biological and social heritage, enabling them to complete a
picture of themselves and their identity.
The DCSG placed this issue in a human rights context, arguing that the Convention
on the Rights of the Child supports the right of every child to know their
The DCSG particularly pointed to article 7.1 of Convention which provides that:
[t]he child shall be registered immediately after birth and
shall have the right from birth to a name, the right to acquire a nationality
and, as far as possible, the right to know and be cared for by his or her
In her submission, Dr Sonia Allan suggested:
[a]cademic literature has increasingly emphasised that relations
based on blood are less important in shaping a child's development than
previously thought. However, it is also the case that societies such as
Australia place great weight on 'blood relations [as]... the basis of kinship'. Despite
a child's development being shaped by social as much as biological factors, knowledge
of one's immediate genetic heritage is thus considered integral to the
self-identity of most people.
Mrs Caroline Lorbach from the DCSG agreed:
[t]he denial of such rights of access to one group can have
severe adverse effects on their perception of themselves and their position in
the world. We are concerned that denial of rights purely on the basis of their
date of birth has produced a minority group afforded fewer rights than their younger
counterparts. The federal government has a responsibility to store and protect
the existing records before they are lost or destroyed forever and to ensure
that donor conceived people have the same rights that everyone else in the
population has, regardless of when they were born and what state they were
Ms Susan Hurst, the mother of a donor conceived child, suggested that
donor conceived people not only need information about the donor, but also need
to be able to form relationships with other biological relatives:
[t]o be human is to be part of a long line of biological
history - 2 sides. ...[Donor conceived] children will most likely have a
wonderful life [but] there is family that this person deserves to have the
opportunity to know. Biological [g]randparents (who may not have wanted their
grandchildren donated away), half brothers, half sisters, uncles, aunties and
cousins. People that would/could make our cherished donor conceived children 'whole'
- and who also deserve consideration. Donor conceived children need
transparency. They need to know who they are.
However, not all donor conceived people want to meet their donor. Miss Claire Armitage
explained that meeting the donor who enabled her conception was not the issue
I do not care to know the man who helped to biologically
produce me. I do, however, care to know where I am from, in the world, where my
cultural roots lie, as well as my ancestors. At this time in my life, I want to
know where I am from, so I might finally navigate where I am going.
Another submitter also does not necessarily want to meet his biological
father. He stated that he calls his social father 'dad':
...because that is what he is to me[. H]e has partly raised
me and always treated me as his son.
...[T]here would be some information about my biological
father I would like to know but I don't think I would [want] to meet him and I
definitely wouldn't want anything from him. I already have a father and he will
always be my father.
The committee received evidence suggesting
that the absence of family medical histories and genetic information
could have serious implications for the health of the donor conceived in terms
of diagnosis and the treatment of illness.
Dr Sonia Allan submitted that the
importance of access to medical information is 'undeniable' and that donor conceived
individuals who are denied access to such information are placed at risk as a
result of not being informed about their genetic heritage.
One submitter who was only able to obtain very limited non-identifying
information in relation to his biological father expressed his personal
[o]ne of the biggest problems I have is the worry of
hereditary diseases as I have no medical history on the donor.
Conversely, some donor conceived people, prior to being told of their
donor conceived status, have worried needlessly about the risk of inherited
health problems from their 'social' fathers.
Importance of disclosure
Over the past 30 years, the importance of disclosing to donor conceived
children their biological origins has become more widely accepted. Parents are
now being encouraged to tell their children that they are donor conceived. Most
states and territories, including the ACT, Victoria, South Australia and
Western Australia, produce booklets to assist parents to discuss this issue
with their children.
Dr Martyn Stafford‑Bell of the Canberra Fertility Centre advised
the committee that this is not a new development:
It is not an emerging practice at all; it has been standard
for years. I have been telling patients that they need to tell their children
since we opened the sperm bank here in 1978.
...But it is ultimately up to the parents to decide, because
they may feel that it is not in the best interests of the child to know. You
could think of several reasons why you should not tell a 15-year-old that they
are donor conceived—or an eight-year-old.
Analogy with adoption
Adoption is a legal process where the rights and responsibilities for
the care and welfare of a child are transferred from the child's birth parents
to their adoptive parents, and the legal relationship between the biological
parents and the child is severed.
All states and territories have legislation in relation to adoption,
and Appendix 2 to this report sets out the legislation governing adoption in
This 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.
There are contact vetoes that may be put in place in some states, and
adopted people are only able to access identifying information at age 18,
except in the ACT, where the age limit is 17 years and 6 months.
In many states and territories, adopted people may access identifying
information earlier with the agreement of their adoptive parents, and in some
cases, their birth parent's agreement.
Several submissions drew a parallel to retrospective changes to the law
which allow the release of identifying information about the biological parents
of adopted children, and proposals to retrospectively provide for identifying
information about their donors to be provided to donor conceived children.
For example, Ms Louise Jamieson and the International Donor Offspring
[p]arents wishing to adopt nowadays are required to accept
their child's own history and heritage. No longer is a child or baby considered
a "clean slate". There is a thorough vetting and preparation process,
whereby would-be adoptive parents must work through their own motivations,
acknowledge the separate identity of the child/ren they wish to adopt, and
recognise the grief and loss already experienced by the child/ren.
How much more should this be the case in donor conception,
where the situation is arguably even more complex (owing to the innate
imbalance between the mother/father genetic/adoptive relationships).
Similarly, Ms Elizabeth Marquardt from the Centre for Marriage and
Families, Institute for American Values observed:
[d]onor conception in my country [the United States of
America]—and I believe also in yours—functions much more like a market. Rather
than being an institution or centred on the best interests of the child, donor
conception operates more as a market oriented around the desires and rights of
parents to acquire children. There is a very different set of ethics and
practices involved. Sometimes people say to me, 'Aren't donor conception and
adoption the same thing?' I say, 'No, they're not, and if you think that they
are, then fine, let's treat donor conception like we treat adoption. Let's have
studies, screenings and inquiries about whether people are a fit parent, and
let's have the state say, "No, I'm sorry, you cannot do this", as
they say to adoptive parents sometimes.' People are horrified by that.
There were some suggestions that, in order to ensure that a person's
true genetic links are recorded and accessible to that person, birth
certificates of donor conceived people should be annotated.
'True' birth certificates
Dr Sonia Allan noted that options to recognise a person's genetic links
on their birth certificate include:
- annotating the birth certificate of a donor-conceived person with
their donor conceived status;
recording both the individual's genetic and social parentage;
- issuing a separate certificate to a donor-conceived child
alerting them to the possibility of information held on the register; or
- issuing a certificate of birth, identifying legal parentage, and
a certificate of genetic heritage, indicating where an individual's genetic and
legal parentage are different.
The committee was advised that Victoria will be making a notation on
birth certificates in the future so that 'when a person applies for a birth
certificate they will be told that further information is available and asked
if they want to access that information'.
At the Melbourne public hearing, Mr Damian Adams spoke of his concerns
about inaccurate birth certificates:
I despise the document that contains my birth details. While
my parents never hid the truth from me and I have always known of my
conception, to me it represents state sanctioned fraud and deception. I have
since investigated through the courts about having my dad's name removed from
this and left as blank, but as they have never dealt with a case like this they
were unable to provide any advice. As it will also cost considerable money to
do, it will have to wait, but it is still something that I will do. I feel
ashamed that I have passed on an untruthful surname to my children. Looking
back, I should have given them my wife's maiden name, because at least that has
concrete familial heritage. Birth certificates must be the accurate and
truthful records of paternity that they are always meant to be.
Many submissions noted that the way birth certificates currently work
makes it possible for parents to conceal the truth from a donor conceived
For example, Mr Adams commented:
[t]he ability for recipient parents to conceal the truth is
made easier for them due to the fact that they are allowed through the
institutionalisation of donor conception practices to create fraudulent birth
certificates...Replacing biological parents with non-biological parents on a
birth certificate and allowing it to occur enshrines deception into the law.
Ms Romana Rossi, a parent of a donor conceived child, also suggested
that truthful birth certificates would encourage parents to tell the truth to
their donor conceived children about their origins.
Similarly, Ms Louise Jamieson and the International Donor Offspring Alliance suggested
that truthful birth certificates are provided in some countries for adopted
children, 'protecting families' privacy, whilst ensuring that the truth of
their adoption cannot be withheld from adoptees'.
Miss Lauren Burns also drew an analogy with adoption:
unknown87unknown1I think there is
also the issue of owning the information. At the moment we are quite beholden
to other people to inform us; whereas I think the paradigm should shift to
recognise that it belongs to us...I think there are a number of mechanisms to
do with, for example, birth certificates. With adoption a biological birth
certificate is issued, and then a social or legal parentage birth certificate
is then reissued, but you can always go back and find that information. There
are various means of doing so, parenting orders and so forth, in which you can
maintain both the social and the biological information available to the child.
I think you avoid a lot of the trauma of finding out later in life.
Mrs Myfanwy Cummerford noted that concealing information about a
person's biological heritage affects not just the donor conceived child, but
also their descendants:
[t]he lack of any formal record documenting the familial link
between the gamete donor and any children produced means that should the
recipient parents not disclose then the donor conceived person has no way of
ascertaining the truth. And any descendant researching their family history
shall be (colloquially) led up the garden path.
One submission suggested that birth certificates should not identify anyone
other than the legal and social parents of the child.
Another suggested that the social parent of the donor conceived person should
be able to determine when, and if, information about the donor should be passed
on to their donor conceived child, rather than the government having control of
this process through, for example, annotating birth certificates.
Another submission noted that birth certificates are used for banking,
kindergarten, school and many other identity uses. The submitter suggested that
'[i]t is not necessary to label a donor child or humiliate them when producing
their birth certificate for such purposes'.
Similarly, Dr Sonia Allan submitted that any suggestions to annotate
birth certificates for donor conceived people should not be considered lightly:
[these suggestions] are [not] without shortcomings...and some
are more problematic than others. It might be argued in the alternative that it
would be unacceptable (or traumatic) for a person to find out that they were
donor conceived by way of application for a birth certificate if their parents
have not told them about their conception. Similarly having a different birth
certificate or a birth certificate that is marked in some way when compared to
those of non donor conceived people might result in a donor conceived
individual feeling stigmatised or resenting that information about their
conception may be known to others when they, for example, use their birth
certificate to open a bank account, get a driver's licence or any of the many
other things for which birth certificates must be shown.
However, in response to any suggestion that donor conceived people could
be discriminated against if their birth certificates record that they were
donor conceived, one submission noted that birth certificates are not actually
required to be presented for many purposes, especially not in many contexts that
are likely to result in discrimination.
Is a 'rights' approach appropriate in this context?
While many submissions and witnesses framed the issues surrounding donor
conception in terms of the rights of donor conceived individuals or the rights
of donors, some research in related areas of public policy suggests that an
approach that focuses on 'rights' may not be of great assistance in this
The Australian Law Reform Commission (ALRC) and the Australian Health
Ethics Committee's (AHEC) 2003 report into the protection of human genetic
information in Australia, Essentially Yours: The Protection of Human Genetic
Information in Australia, ALRC Report 96, considered analogous issues
relevant to genetic parentage testing and cautioned that:
...this is not an area in which it is especially useful to
draw on the language of 'rights'—whether that be a child's 'right' to know his
or her biological parentage, or a man's 'right' to know who are his biological
offspring. This is an area that requires a careful balancing of interests of
mothers, fathers and children in different biological and social relationships
with each other. To privilege the interest of one party by accepting a claim to
an absolute right fails to give adequate regard to the interests of others
involved in the equation.
By contrast, and in the context of the current inquiry, the Public
Interest Law Clearing House (PILCH) argued that the issue of access by donor
conceived individuals to donor information in Victoria raises a number of
complex human rights issues:
[o]n the one hand, the denial of access to donor identifying information
may be inconsistent with...[provisions of the Charter of Human Rights and
Responsibilities Act 2006 (Vic)] including the freedom of expression
(including freedom to seek and receive information of all kinds), the right to
recognition and equality before the law, the protection of families and
children, and cultural rights. On the other hand, the right of donors to
privacy and reputation may be impinged upon if access to donor identifying
information is too freely available.
A balance must be struck between the rights of donors and
donor conceived individuals. PILCH submits that a human rights-based approach
to access to donor information provides a helpful framework for addressing and
balancing these concerns in a nuanced way.
Mr Lyle Shelton of the Australian Christian Lobby focussed on the
importance of the rights of the child:
[w]here the state must provide a regulatory framework—which
it must around issues of new reproductive technologies—it is incumbent upon the
state to ensure that kids' rights come first.
...[i]t requires us to make hard choices between the rights
and often legitimate desires of adults and the human rights of children.
It should also be noted that the Assisted Reproductive Treatment Act
2008 (Vic), Assisted Reproductive Technology Act 2007 (NSW), the Reproductive
Technology (Clinical Practices) Act 1988 (SA) and the Human Reproductive
Technology Act 1991 (WA) all emphasise the importance of the welfare of
donor conceived children. In NSW, the importance of a child's right to
information about their donor is also recognised. In relation to the WA
legislation, Dr Nyaree Jacobson of the Western Australia Department of Health
[w]e are very much focused on the rights of donor conceived
individuals. Our legislation is very concerned that donor conceived individuals
be able to access identifying information about their genetic origins.
However, despite the importance placed on the welfare of donor conceived
people, much legislation regulating donor conception practices, such as the Assisted
Reproductive Treatment Act 2008 (Vic), is not retrospective and grants
different rights of access to information to donor conceived children,
depending on when they were born.
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