Finding out about
your donor’s
personal and family
medical history
“What do I say if I take my child to the doctors and they
ask if there is a family history of X, Y or Z? I may not
know the answer or feel unsure about what to say.”
A family medical history
is a record of health
information about a
person and his or her
close relatives. It can
include information
about the health of a
person’s parents, siblings,
grandparents, cousins,
uncles and aunts.
This is a common question asked by
parents of donor-conceived children.
Many express anxieties about their lack
of knowledge about their child’s family
medical history and worry about how
this might impact on their future health.
The aim of this leaflet is to provide
information about the UK’s
donor screening and assessment
requirements to reassure parents of
donor-conceived children and to help
with some questions parents may be
asked about their child’s family medical
history.
Donor screening and assessment in the UK
All egg and sperm donors must be
medically screened and assessed before
being accepted as a donor for treatment
at a UK fertility clinic. All UK clinics are
licensed by the fertility regulator, the
Human Fertilisation & Embryology
Authority (HFEA), and must adhere to
the thorough screening requirements
set out in its Code of Practice. They
should also follow guidance produced by
relevant professional bodies at the time.
Because of this, in the vast majority
of cases, the risk that your child would
inherit a significant condition from their
donor is very low.
The screening requirements and
guidelines change from time to time so
you should contact your clinic to find out
exactly what your donor was assessed
and screened for.
Common questions
What blood tests does a donor
undergo?
Current guidelines require all donors
to undergo basic blood typing, rhesus
status (positive or negative) and
screening for blood-borne viruses and
sexually transmitted infections.
Donors must screen negative for HIV,
hepatitis B and C, and human T cell
lymphotropic viruses (known to cause
a type of cancer). All donors should
also be tested for syphilis, gonorrhoea
and chlamydia to minimise the risk of
transmission.
Your clinic should be able to provide
you with information about the specific
screening procedures that the donor
underwent at the time.
Your clinic should be able to provide
you with information about the genetic
testing that the donor had when he or
she donated.
How is a donor’s personal and family
medical history assessed?
Fertility clinics must select donors on
the basis of their age, health and medical
history. This information is provided on
a questionnaire and through a personal
interview performed by a qualified and
trained healthcare professional.
When taking a donor’s medical history,
guidelines state that the clinic should be
satisfied that the potential donor does
not have a family history of:
• a disease with a major genetic
component (i.e. where a gene
mutation can play a major role in
the development of a disease) such
as cleft lip or palate, congenital hip
dislocation, neural tube defects,
congenital heart malformation,
clubfoot or (in the male) hypospadias
What genetic tests does a donor
undergo?
All donors should undergo appropriate
genetic testing including testing for
chromosomal abnormalities. If the
donor comes from areas where the
following conditions are prevalent,
genetic testing for the following may be
considered:
• any significant Mendelian disorders
(caused by mutations in one
gene that can run in families),
such as albinism, haemophilia,
haemoglobin disorders, hereditary
hypercholesterolaemia,
neurofibromatosis or tuberous
sclerosis
• α0- and ß-Thalassaemia (e.g.
Mediterranean, Middle East, Indian
subcontinent)
• sickle-cell disease (e.g. African and
Afro-Caribbean)
• T ay-Sachs disease (e.g. Jews of
Eastern European descent)
• cystic fibrosis disease (e.g.
European).
• a disease with a known or reliably
indicated genetic cause, such as debilitating asthma, juvenile diabetes mellitus, epileptic disorder, severe
hypertension, a psychosis, rheumatoid arthritis or a severe refractive disorder
you had treatment, or by contacting the
HFEA: www.hfea.gov.uk/118.html.
• a chromosomal rearrangement What if there isn’t much information
about the donor’s personal and family
medical history provided by the clinic?
that may result in unbalanced sperm or eggs (which can lead to developmental problems).
How do I find out about my donor’s
personal and family medical history?
Fertility clinics are required to list any
physical illness or disability, history of
mental illness or learning difficulties
and any known medical conditions
within the donor’s biological family in
the HFEA donor information form. This
information is submitted by the clinic
to the HFEA as part of the process to
register the donor.
You can access medical information
recorded on the donor information form
by contacting the fertility clinic where
If little or no information about the
donor’s family history has been supplied,
this can indicate that after extensive
questioning there is either nothing
known or nothing of any significance.
Only in rare cases will a lack of personal
or family medical history about a donor
make any significant difference to the
health or health care of the donorconceived person.
How important is a person’s family
medical history?
A person’s family medical history can
give clues to medical conditions that
may run in a family.
Donors will be excluded from donating
altogether if their personal or family
medical history suggests a child might
inherit significant health risks. If your
child does develop a condition in
childhood, it is unlikely that this will be
because of the donor’s family medical
history.
Furthermore, experts say that
family histories of particular medical
conditions (such as heart disease) may
only play a very small part in determining
whether or not a person develops a
particular condition. In fact, this can be
influenced by a combination of factors
including environmental conditions and
lifestyle choices.
What if my donor develops a
significant medical condition which
may have a genetic cause after they
have donated?
If a donor discovers they are at
increased risk of an inherited condition
they should contact the fertility clinic
they donated at.
Very often such new findings will have
no implications for donor-conceived
children, but the fertility clinic can help
interpret the new information. The
clinic will assess the risk to any donorconceived children and only contact
the parents if they feel it necessary and
refer them to a relevant professional for
appropriate advice.
How do I find out if the donor has
updated his/her medical information
at any stage?
If you want to find out whether your
donor has updated his/her medical
information, you can contact the
HFEA or the clinic where you received
treatment.
Should I let the donor know if my
child develops a significant genetic
condition?
What should I say if a health
professional asks about my child’s
family medical history?
If your child develops a genetic
condition, you should inform the clinic
where you received treatment. The
donor will have informed the clinic if they
want to be contacted with information
of this nature in case it means that they
have a previously unsuspected genetic
disease, or that they are a carrier of a
harmful inherited condition.
You may want to say that your child is
donor-conceived and that there was
nothing in the donor’s medical history
which was deemed by the fertility clinic
to be significant. In the unlikely event
that a doctor asks you for further
information, you should contact the
clinic where you received treatment.
What should I tell my child?
It is important for parents to talk to their
child about how their donor’s health and
medical history will have been assessed.
If you received treatment at a UK clinic,
you can reassure your child that he/she
will have been assessed and screened
to minimise the risk of passing on any
serious genetic condition.
What donor screening or assessment
will have taken place if my clinic
imported sperm, eggs or embryos
from an overseas clinic or bank?
You should always check with a UK clinic
before seeking to import sperm, eggs or
embryos from overseas. A UK clinic can
only import sperm, eggs or embryos
from an overseas clinic or bank if they
meet the UK requirements on screening
in accordance with the HFEA Code of
Practice.
For further information you can contact
the HFEA, the clinic where you received
treatment, or the overseas clinic or
bank.
What if I had treatment abroad or in a
private arrangement?
If you travelled abroad for treatment,
you cannot assume that the screening
and assessment regime was exactly
the same as in the UK, although broadly
similar professional guidance is likely to
have been in place. You should contact
the clinic where you had treatment for
further information.
If you had treatment through a private
arrangement (i.e. the donor provided
his sperm directly to you) without the
involvement of a UK clinic, you cannot
be assured that the same, or indeed any,
medical screening will have taken place.
If you know the donor, you may wish
to ask for information about his family
medical history.
Find out more
If you have any concerns about the health of your child, you should speak
to your doctor in the first instance.
To find out what screening procedures your donor underwent, contact the
clinic where you received treatment or the HFEA:
www.hfea.gov.uk/118.html.
For general information about the current donor screening requirements
see:
• HFEA Code of Practice: www.hfea.gov.uk/498.html.
• Professional guidelines: http://informahealthcare.com/toc/huf/11/4.
You may also want to contact the Donor Conception Network, a self-help
network for families created with the help of donated eggs, sperm or
embryos: www.dcnetwork.org.
Lifecycle is a campaign that aims to
find new ways of improving sperm and
egg donation in the UK. Find out more
on the HFEA website:
www.hfea.gov.uk/lifecycle.html.
Produced September 2014.