CHAPTER 5 - Risk of consanguinity and limits on donations
This chapter considers the risk of consanguinity for donor conceived
people and what limits should be placed on the number of donations that can be
- the risks of consanguine relationships and, in particular, the
impact on the ability of donor conceived people to have meaningful
relationships with donors and half-siblings; and
- whether limits should be established on the number of donations a
donor can make, including:
variations between limits in different jurisdictions;
- the enforcement of limits between jurisdictions;
how any limits should be expressed; and
- what is an appropriate limit.
Risk of consanguine relationships
Donor conceived people highlighted the risks of inadvertently forming
consanguine relationships due to their lack of access to donor information. 'Consanguinity'
in this context refers to a partnership or marriage between two individuals
from the same family. It is widely accepted that consanguine relationships can
increase the risks of serious genetic disease in any resultant children. Given
the significant stigma that attaches to consanguinity (more commonly referred
to as 'incest'), the inadvertent formation of such a relationship could also
lead to serious social and personal consequences for a couple and their children.
Further, consanguinity may have adverse legal consequences. For example,
the Marriage Act 1961 (Cth) specifies that a marriage is void where it
is between a person and their whole- or half-blood brother or sister.
The risk of inadvertent formation of consanguine relationships may be
enhanced where a donor has made, for example, multiple donations of sperm. Dr Sonia
Allan noted that the risk of consanguine relationships may be more acute in
states and territories with small populations, or in closely knit communities
which may draw from a similar pool of donors from the same clinic.
However, the statistical probability of entering into consanguine
relationships may not be high.
As Dr Martyn Stafford-Bell of the Canberra Fertility Centre advised:
...there is no adjective which accurately describes just how
tiny this chance really is. If you consider for a moment the number of people
at any one time aged between, say, 20 and 38 in the community who are donor
conceived as a percentage of the total number of people of that age group in
the community, you can see just how tiny it is, and the chance of two of those
people meeting [is] even tinier, and the chance of them both coming from the same
donor even more remote...
For many donor conceived people though, knowing that they are donor
conceived makes them more cautious about entering into relationships. As Ms Elizabeth
Marquardt from the Centre for Marriage and Families, Institute for American
...[forming a consanguineous relationship]...is a real fear
among donor conceived persons. In our study...donor conceived persons were far
more likely, even than those who were adopted, to say that they have worried
that they could be unknowingly attracted to someone who is their sibling or
that their children could date someone who is the child of one of their
Mr Richard Egan representing FamilyVoice Australia also noted:
[i]t is not just the issue of consanguineous relationships,
which are statistically unlikely; it is the psychological impact on the child
who, for a fellow, will be wondering about every girl he sees, 'Is she my
half-sister?' You do not know where your siblings are.
Impact on ability to have
meaningful genetic relationships
Several submissions noted that it is important to limit the number of
families a donor assists, not only to prevent the risk of consanguinity, but
also to limit the number of half-siblings a donor conceived person could have. The
Victorian Infertility Counsellors Group noted that it is not unusual for donor
conceived people to discover that they have up to twenty genetic half-siblings
and this can be daunting in terms of making sense of their identity and what 'family'
means for them.
Mr Damian Adams described the issues he faces as a donor conceived
person, who is not able to find out if he has any half-siblings because he does
not know the identity of his donor:
[p]ersonally I am deeply traumatised that there could even be
one half‑sibling that I have never known and will never get to know, let
alone the fact that there could easily be dozens. While never being able to
know your own family is emotional enough, the fact that there may be numerous
half‑siblings is deeply disturbing on a level akin to being manufactured
to appease the masses. We are human beings with biological and social families
yet the ability to produce so many siblings is actually dehumanizing. Therefore
it is suggested that the limit to donations should be capped to 3 families and
or a total of 6 offspring...to also reduce the psychological burden on
offspring of having so many siblings out there that they will never know.
Miss Narelle Grech, a donor conceived person who knows that she has
eight half-siblings but has not been able to identify them, provided an insight
into her personal experience:
[a]s for my DC [donor conceived] siblings I often wonder
about them, whether we have met or I have walked past them in the street. Do
they know they are DC? Will their parents ever tell them? Will I ever have the
chance to meet any of them? Recently, with the wonder of Facebook, I was
pointed to a friend of a friend whom they said reminded them of me. To anyone
else they might laugh and go along their day. For me it meant looking at this
person's profile and analysing everything about them. Looking for physical
similarities and comparing interests, ages and so on. I think there might be
something in this link, but what am I to do? Do I approach this person and
potentially open up a Pandora's box for them? Don't they deserve to know the
truth about their own identity if they are DC? And what about me? Shouldn't I
be able to know my own siblings?
Ms Elizabeth Marquardt of the Centre for Marriage and Families,
Institute for American Values, observed:
[b]y not having limits, we are asking people to struggle with
making sense of their own identities amid kinship networks in a way that no-one
in human history has ever had to do before.
Mr Richard Egan of FamilyVoice Australia commented:
...[t]here is not just the possibility of mistakenly entering
into a romantic or sexual relationship with one of them, but also, if you
decide to reconnect all the pieces of the jigsaw puzzle of your family—we know
how hard that is for adopted children where there are only two families
involved—and we are allowing five different families to have children from the
same father, try connecting that. It is more than a life's project to try to
bring that together. It just seems unjust to me to be imposing that fracturing
of family on children.
Some donor conceived people, who have been able to locate their donor
and their half-siblings, described it as a relief.
Often, parents of donor conceived people who have chosen to inform their child
that they are donor conceived, have been supportive of their search for their
donor and half-siblings.
Miss Lauren Burns described meeting her donor and his children:
[h]e has a name and it is Ben. I was most fortunate in that I
found myself in the capable hands of the counsellors at the ITA [Infertility
Treatment Authority – now VARTA], who were wonderful in helping Ben and I forge
our fragile connection. We exchanged letters and photographs and talked on the
phone. In November 2009 I went to visit him for the first time and met his
teenage children, my half siblings, two girls and a boy. I was very nervous
prior to the meeting, but when I arrived I felt at ease. We all share many
characteristics, both in appearance and temperament, and even mannerisms.
The overwhelming feeling I took from this meeting was relief.
Relief that I had found a small chink in the imposing wall of legal structures
designed to separate me from truth. Most of all, relief that I finally had answers
to questions about the source of my personality and interests and no longer
faced an uncertain future of missing knowledge concerning my biological
heritage and identity.
Variation between jurisdictions on limits
In formal settings today (that is, clinics), there are generally limits
to the number of families that may receive gametes from a single donor. In
Western Australia, a maximum of five families may receive gametes from a single
donor unless there are exceptional circumstances.
In New South Wales, donated gametes cannot be used if this is likely to result
in offspring of the donor being born to more than five women (including the
donor, or a current or former spouse of the donor).
In Victoria, a donor's gametes cannot be used if it would result in more than
ten women having children who are genetic siblings.
However, although Victoria has a limit of ten women for each donor, some 'rural
clinics impose a smaller limit of five families for a donor' to take account of
'the potential for meeting related families and future contact with [the
In Queensland, South Australia, Tasmania, the Northern Territory and the
Australian Capital Territory, the NHMRC Guidelines provide that 'clinics must
take all reasonable steps to reduce the numbers of genetic relatives created
through donor gamete programs' to protect donor conceived people, and donors, from
having too many genetic siblings or too many offspring, respectively.
In particular, the NHMRC Guidelines state:
[g]ametes from one donor should be used in a limited number
of families. In deciding the number of families, clinicians should take account
the number of genetic relatives that the persons conceived...will
the risk of a person conceived with donor gametes inadvertently
having a sexual relationship with a close genetic relative (with particular
reference to the population and ethnic group in which the donation will be
the consent of the donor for the number of families to be
whether the donor has already donated gametes at another clinic.
Enforcement of limits
A number of submissions noted that the inconsistent approaches between
the states and territories regarding registration of donors mean that there is
no way of accurately knowing or controlling the number of families a particular
Several submissions also reported that the current state or clinic based
data management arrangements mean that there is no way for clinics to ensure
they comply with limits on donations. For example, SMC Australia referred to an
[a] member was informed by the donor co-ordinator of their
Queensland clinic that sperm imported from the US would only be imported for
use by that clinic. Through their own networks, the member later found that
sperm from the same donor had also been imported by a clinic in [NSW] and used
by a number of families in that [s]tate. Neither clinic seemed to have
knowledge that the situation had occurred.
Dr Damien Riggs, a researcher in the field of sperm donation, pointed
out that donors may be donating in multiple states:
[a] man should not be able to donate sperm in one state that
can be used for 10 families and then go to another state and do that. There
could be a huge number of children born from that, because his sperm can be
used for 10 families but, obviously, those families could have three children
each. So there are a very large number of potential children from one man's
According to some, the variations between jurisdictions regarding limits
also make it possible to circumvent limits by transferring gametes and embryos
to other jurisdictions.
SMC Australia indicated that they are aware of circumstances where a donor has
reached their limit through donations to clinics and has then gone on to make
additional private donations.
Mrs Fiona Hearne of SMC Australia advised the committee that, even
though there are limits, there are occasions where clinics do not abide by
[t]here are 13 families. I was told when I started the
treatment that it would be limited to 10. I recently spoke to the clinical
director of the clinic I used and he said, 'I will tell you how that happened',
and I said, 'I know how it happened. You guys have stuffed up', which was
totally true. They were keeping a record but they were not keeping an exact lid
on it: 'This person is using this donor, but we actually have another clinic
and this person is also using that donor'. So my daughter is one of 17. The
donor has three children of his own, so she is one of 20.
SMC Australia also noted that there has been a lot of confusion among
clinics about how the limits apply, with one NSW clinic taking the view that
the limit applies only to women in NSW, while another clinic is of the opinion
that the limit applies to women world-wide.
How should any limits be expressed?
It is possible to set a limit on donations in a number of different ways
– for example, by reference to the number of children born, the number of women
assisted, or the number of families assisted.
A number of submissions considered that a limit should be placed on the
number of families assisted, rather than the number of women, because this
would take into consideration lesbian couples where both women choose to use
the same donor to ensure that their children are genetically related.
In relation to this point, Dr Riggs made the following observations:
...as far as I know...if a lesbian couple accesses some donor
sperm in a clinic, they count as one of the donor's 10 families, where one
woman carries the child. However, if the other woman wants to then carry a
child, she is classed as a separate family and must use a separate lot of
sperm. I think that is probably a nonsense in the sense that both women are the
parents of the children, so the children are not likely to have any
relationship as adults that is inappropriate because they know they are brother
and sister or brother and brother et cetera...We are in a sense wasting some of
our available donor resources because we are mandating that if both women in a
lesbian couple decide to get pregnant they must use different donor sperm,
which to me does not make any sense.
Similarly, some submissions suggested that the limit should not be
expressed in terms of children, because this could lead 'to the possibility
that some women may be artificially prevented from completing their family with
and may need to use a different donor, with the result that their children
would then have different biological fathers.
What would be an appropriate limit?
Of those who supported a limit being expressed by reference to the
number of families assisted, the preferred number of families was either one,
or ten families.
Mrs Leonie Hewitt, Ms Michelle Cefai and Mrs Caroline
Lorbach, all of the DCSG, supported a limit of no more than five families using
a single donor, noting that if a donor only wants to donate to one family, that
should be respected.
Dr Sonia Allan observed that setting a limit was a difficult proposition,
but she supported a limit of 'no more than three [families] and preferably less...dependent
upon the number of children within a family'.
Mr Richard Egan of FamilyVoice Australia stated that, if donor
conception is to continue, his organisation supported only one family using a
Some submissions supported the limit only applying to donations in
Australia, while others supported the limit applying world-wide. The Canberra
Fertility Centre suggested that a limit of five families world-wide would be
unnecessarily restrictive and that the limit should be five families in
However, one submission suggested that the donation limit should be set at an
international level in order to have any meaningful effect on reducing the risk
Another factor raised was the impact that any limit could have on the
number of families able to access donor treatment, taking into account the low
rate of sperm donation in Australia relative to demand. For example, Monash IVF
considered that limiting the number of donors to less than ten families would
severely limit the number of people able to access donor treatment.
Some submissions noted that a limit should be set according to evidence‑based
research, 'rather than whim or assumption'.
Finally, some submissions argued that the only real way to limit the
risk of consanguinity is to remove anonymity regarding donor conception, such
as through the establishment of a national register or by requiring that a
donor's identity be recorded on the donor conceived child's birth certificate.
By way of example, Ms Louise Jamieson and International Donor Offspring
Alliance argued that it is 'absurd' to use donation limitation as the means to address
the danger of consanguinity.
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