Memorandum from the Donor Conception Network
1. The Donor Conception Network was founded
in 1993 as a self-help network of parents of families conceived
through donated gametes, adult offspring, and those contemplating
or undergoing treatment. We have over 800 member families throughout
the UK and some overseas. We include those who are still coming
to a decision about whether donated gamete treatment would be
right for them; those undergoing treatment which has not yet been
successful; those who already have children but have not yet found
it possible to tell their children or families but intend to do
so; and those who have children and wish to be in contact with
other such families. Our members include married and unmarried
couples, single women, lesbian couples, parents who have been
separated, divorced or widowedand individual adults who
are donor offspring. The majority of the membership comprises
families who have been or are being treated with donor sperm insemination;
a growing number with donated eggs or embryos.
2. Our philosophy is clear. We believe that
high quality relationships in families are best promoted through
honesty and openness, and that the secrecy that used to surround
donor treatment is no longer appropriate. It is of fundamental
importance that those conceived in this way should be toldpreferably
as early as possible in their lives. We produce a range of children's
story books and other materials to help and support parents in
explaining the facts.
3. We have also supported the ending of
donor anonymity. Anonymous donation assumed children would never
know. Long before Parliament sanctioned anonymous donation, doctors
recruiting sperm donors offered them anonymity. They saw this
as a simple contract between the donor and the potential parents
where the doctor acted as broker. All parties would want secrecy
because of the perceived stigma of infertility and the presumed
desire of the donor for lack of legal/financial or other involvement.
No one thought about the effect on or the rights of the people
conceived because it was assumed they would never know the truth
about their origins. Now that people conceived through donor treatment
will in growing numbers know about their origins, either because
their parents tell them or because they take advantage of their
right to consult the HFEA register, the assumption underlying
the offer to donors and parents of anonymity is no longer valid.
We have a changed worlda world in which lying, deceit and
secrets should have no part.
4. We are warmly supportive of the Health
Minister Melanie Johnson's desire to change the culture of donor
treatment and donor recruitment towards a more open and relaxed
climate. Donors should be valued for what they do, giving the
most significant personal charitable donation possiblethat
of their genetic material. They should be prepared to tell their
family members, and their present and future children. Parents
should find no inhibition in telling their donor conceived children
about how they were brought into the world.
5. The HFE Act makes appropriate provision
for the legal position of donors (exempting them from financial
and parental responsibility) and establishing the parental rights
of the family into which donor conceived children are born. This
rightly depends on the treatment taking place in a UK licensed
clinic, following the offer of counselling and the completion
of relevant consent forms. A Register is to be maintained by the
HFEA of donors, donor treatments, recipients and children born.
Clinics in which treatment takes place and in which gametes are
stored are to be inspected and licensed by the Authority.
6. The robustness of these provisions both
in legal and practical effect is of vital importance to those
involved in donor treatment and will be even more so following
the ending of donor anonymity. A Register in which the live birth
information is 100% accurate is vital.
7. The current legislative framework is
deficient in a number of respects.
8. The scope of activities that are regulated
only covers actual insemination or IVF, or the storage of gametes.
Businesses, whether commercial or not for profit, that offer fresh
sperm that is not "stored" are not within the scope
of regulation. It is doubtful whether businesses that offer packages
of treatment, some of which takes place in the UK and some elsewhere,
are subject to regulation.
9. Donors appear to have no rightsjust
a relief from responsibilities. If the law is unclear, it should
be clarified to ensure that they can be given information about
whether children have resulted from their donation. Donors should
also have the right to be informed if and when an offspring expresses
a request for their donor's identity, rather than being contacted
direct without warning.
10. The position of pre-1991 donors and
donor conceived people and their treatment records should be clarified.
It has taken a legal case [Joanna Rose v Health Secretary and
HFEA] to test the legal rights of pre-1991 donor conceived people.
In the pre HFE Act era donor treatments (nearly all donor insemination)
were carried out in a variety of settings. No one however appears
to have proper responsibility for pre-1991 donor treatment records.
Most clinics that operated before 1991 became licensed by the
HFEA, but others did not. There is nothing preventing the destruction
of pre-1991 treatment records; it was noted in court that the
records of the donor treatment that resulted in the birth of Joanna
Rose had been destroyed. We believe it is important that all pre-1991
records be preserved.
11. Of the treatments and activities licensed
by the HFEA, donor treatment is a minority concern. There are
times when, in the eyes of clinicians, the media and regulators,
other more exciting issues (IVF, ICSI, PGD, PGS, stem cell research,
HLA tissue typing) can appear to swamp donor issues. Moreover
it is of concern to us that the future of the HFEA's functions
has been put in doubt by the Department of Health's review of
Arm's Length Bodies. Donor issues would be diluted even more if
the HFEA's functions were to be merged into a larger body with
a wider remit.
12. Now that the question of donor anonymity
has been settled by Parliament, the most important issue remaining
is how to secure that donor conceived children are told the facts
about how they were conceived. The HFE Act requires that women
should not be treated unless account has been taken of "the
welfare of the child". The HFEA is committed to undertaking
a review of how this provision is applied in practice.
13. Our view is that the welfare of donor
conceived children demands that only those who are clearly committed
to telling their children should be offered donor treatment. Clearly
it is impossible to monitor whether people who have agreed to
tell do actually do so. But it is here relevant to contrast donor
conception practice with that in the field of adoption. Proposed
adopters are required to undertake to tell their children the
facts about their adoption and are not accepted as adoptive parents
unless this had been agreed to. The practice in fertility clinics,
and the professional and regulatory guidance, should adopt this
approach to safeguarding the welfare of children.
14. Assisted reproduction medical practitioners
are not necessarily well equipped with knowledge about family
welfare and child development, but what they say to patients can
be very influential. Nor is it easy for those undergoing or contemplating
treatment that, by definition, has yet to even produce a pregnancy,
to project forward to the issues they need to consider about telling
their potential child. While access to counselling is important,
the role of counsellors is essentially non-directive.
15. The experience of the Donor Conception
Network is that those contemplating donor treatment need access
to independent information and support, and one of the most valuable
sources is from families who have been through the process. The
Network seeks to provide a range of services (helpline, contact
lists, newsletters, meetings, website) to support families not
just at the time when they are contemplating treatment, but throughout
family life and also at later stages in the lives of donor conceived
23 June 2004