Finding out about your donor’s personal and family medical history

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 are donors screened and assessed for 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 tus and must adhere to the thorough screening requirements set out in our Code of Practice. Clinics 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 at the time of your treatment.

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.

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 (ie, 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
• 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
• 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
• a chromosomal rearrangement that may result in unbalanced sperm or eggs (which can lead to developmental problems).

What if there isn’t much information about the donor’s personal and family medical history provided by the clinic?

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 donor-conceived person.

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 donor-conceived children and only contact the parents if they feel it necessary and refer them to a relevant professional for appropriate advice.

Should I let the donor know if my child develops a significant genetic condition?

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.

What should I say if a health professional asks about my child’s family medical history?

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.

I had fertility treatment abroad/ in a private arrangement – what do I need to know?

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 (ie, 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.

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:

• α0- and ß-Thalassaemia (eg’ Mediterranean, Middle East, Indian subcontinent)
• sickle-cell disease (eg, African and Afro-Caribbean)
• Tay-Sachs disease (eg, Jews of Eastern European descent)
• cystic fibrosis disease (eg, European).

Your clinic should be able to provide you with information about the genetic testing that the donor had when he or she donated.

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 form they submit to us.

You can access the information recorded on this donor information form by contacting the fertility clinic where you had treatment, or by contacting the HFEA by email at openingtheregister@hfea.gov.uk.

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 us by email at openingtheregister@hfea.gov.uk or 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?

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 our Code of Practice.

For further information you can contact us by email at openingtheregister@hfea.gov.uk, the clinic where you received treatment, or the overseas clinic or bank.