misconceived secrecy

The law needs to be changed to allow people born as a
result of donor-assisted conception to learn about their
background, argues Julia Feast, not just for reasons of openness,
but of medical necessity too.

As the number of children available for adoption declines, and
medical technology advances, the number of children born as a
result of donor-assisted conception increases. But whereas adoption
is no longer conducted in a shroud of secrecy, donor-assisted
conception most certainly is: the majority of people creating their
families using donated sperm, eggs, or both do not tell the child
that they have been born as a result of donor-assisted
conception.

Yet it could be argued that these children, who as adults will
be responsible for making their own decisions, have insufficient
information upon which to make decisions that might affect their
lives profoundly. How can they make key decisions if they have not
been given full information about their heritage and background?
There are no clues about their donor status in official documents
such as their birth certificates. This makes it easier for parents
to mislead their children.

During the past few years there have been incidents of reports
about sperm donors who subsequently found that they carried a
genetically inherited condition. One recent case concerns a Dutch
sperm donor who fathered 18 children during the 1980s.¹
He has a degenerative brain disease and his offspring have a 50 per
cent chance of inheriting this condition. The families of these
children are now to be informed of this development so that their
children will be able to make an informed choice about whether or
not to have their own children, in the full knowledge of the risks
of passing on this disease.

A government consultation on providing information about donors
closed last week.² This is an important issue and
practitioners as well as policy makers now need to get to grips
with some of the moral and ethical issues that are raised by
maintaining the current position of donor anonymity.

The adoption practice that has developed over the years has
taught us a tremendous amount about children’s need for information
on their background. Background details of the child’s original
family – such as medical history, physical description, personality
and talents have shown that children can benefit greatly from this.
The information helps them to make sense of themselves.

But there is a school of thought which argues that the needs of
adopted children and donor-conceived children cannot be compared.
It is true that there is a fundamental difference, as often a
donor-conceived child has a genetic relationship with one parent,
whereas unless it is a step-parent adoption, adopted children have
no genetic link with either parent. But does this difference mean
that donor-conceived children, young people and adults should have
no right to obtain information?

We are beginning to hear from donor-conceived adults about the
injustice of this position. They describe their thirst for
information about their genetic parent with equal force as adopted
people have done in the past. But as the law stands the only rights
donor-conceived people have are that at the age of 18 (or 16 if
they are planning to marry) they can find out if the person they
are proposing to marry is related. Of course they can only do this
if they have been told of their donor-conceived status, and this
opportunity is only for donor-conceived people born after the Human
Fertilization and Embryology Act 1990, and was not retrospective.
Yet since 1975 adopted people have had the right to access their
original birth certificate, which provides information they need to
find more about their origins and birth parents. Research evidence
demonstrates how adopted people have benefited from this.

Parents of donor-conceived children may be anxious about being
open, for fear that the knowledge may cause the child not to love
them as much. However, in Turner and Coyle’s study³ of
donor-conceived adults one of their participants reported: “I felt
a considerable amount of regret about how utterly senseless it had
been for my parents to keep this information (being a donor
offspring) from me for so long. My mother expressed a fear that
both of them felt during my childhood that if I had found out my
dad was not my genetic father, I would have rejected him. The
tragic irony of this was the sense of rejection I sensed from him,
that there was something wrong with me that made him seem so
distant from me.”

Adoption research⁴ has shown that the relationships
formed in childhood can remain strong and withstand the adopted
person’s search for identity and reunion with a birth relative.
Being a parent is about caring for a child on a day to day basis,
regardless of whether or not there is a genetic relationship. So
why has this message not got through to parents of donor-conceived
children?

Self-help group the Donor Conception Network has for 10 years
offered support, information and advice to prospective parents and
parents of donor-conceived children. Their fundamental philosophy
is to be open and frank with the child about the information they
have. But the amount of information available can be very limited.
Sometimes no details are known apart from the donor’s blood group.
So even when parents want to be open with their children they are
often in a position where they cannot provide answers.

In the late 1980s there was a public outrage when it was
discovered that thousands of children were sent abroad under the
child migration scheme. A number had been stripped of their
identities and family connections, having been told lies about
being rejected or orphaned. In 1998, a government inquiry on the
welfare of former child migrants reported that such practices could
not happen today. But on the other hand we continue to discriminate
against donor-conceived children by refusing them access to
identifying information about their origins.

Meanwhile, it is not uncommon to see adverts in the press for
egg donors, which reflect the lack of attention given to the
forthcoming child. Statements such as: “Egg sharing is ingenious
and harmless… it neatly brings together surplus and a shortage”,
suggest that the forthcoming children are seen as commodities
rather than human beings in their own right with their own
needs.

While we must not be judgmental about how people choose to
create their families we also have a duty not to ignore lessons and
knowledge learned in the past.

There is an urgent need to provide a legislative framework that
gives donor-conceived people the same rights as adopted people to
access information. Without a fundamental change in legislation we
will continue to create yet another lost generation like child
migrants before them.

All people should have equal rights to information about
themselves if they are to be able to make informed decisions that
might profoundly affect their lives. Adoption legislation does not
force people to find that information but it gives them the choice.
It’s time to stop being complacent about donor-assisted conception
and to amend the wrongs of the past and make sure we get it right
for children in the future.

Julia Feast is manager of the post adoption, care,
counselling and research project at the Children’s
Society.

References

¹ Sperm Donors’ Bad Gene, Reuters, 2001

² Department of Health, Donor Information
Consultation: Providing Information about Gamete or Embryo Donors,
2002, see www.doh.gov.uk/gametedonors

³ A J Turner, A Coyle. “What does it mean to be a
donor offspring? The identity experience of adults conceived by
donor insemination and the implications for counselling”, Human
Reproduction, Vol 15 no 9, pp 2041-2051, 2000

⁴ D Howe, J Feast, Adoption, Search and Reunion-The
Long Term Experience of Adopted Adults, The Children’s Society,
London, 2000

Websites

Donor Conception Network is at www.Dcnetwork.org