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What to Expect

Why have I been referred?

Before the appointment

Consent from relatives

Where will I be seen?

How long will I have to wait?

What will happen at the appointment?

Who will be at the appointment?

What is genetic testing?

Will I be asked to take part in any research?

What to expect from the prenatal genetics clinic

What to expect from the cardiac genetics clinic

What to expect from the Huntington's Disease clinic

Why have I been referred?

In Clinical Genetics we see people for lots of reasons, including:

  • A genetic (or inherited) condition may be suspected in you or your child
  • You may have a relative with a genetic condition, and want to find out more
  • You may have a family history of cancer
  • You or your partner may be pregnant, and have a family history of a genetic condition or problem

Before your appointment

After your doctor (or other health professional) has made a referral, usually we will just send you an appointment for one of our out-patient clinics.

If you have been referred to us because of a family history of cancer, then we will usually send you a questionnaire asking for details about your family members and the types of cancer they have had. Depending on the information you have provided, we may not need to send you an appointment, but we will write to you explaining why.

If your referral is urgent, for example due to a pregnancy, then one of our team may contact you by telephone to get more details and arrange and appointment with you.

Consent from relatives

In Clinical Genetics we often need to gather medical information about people’s relatives. In order to obtain information from medical records we need to ask for the individual’s written consent. Sometimes we will send consent forms to pass on to relatives before the clinic appointment. Alternatively, we may discuss this with you in clinic.

Where will I be seen?

The Yorkshire Regional Genetics Service, based in Leeds, covers a large geographical area including most of North, West and East Yorkshire and North Lincolnshire. We provide clinics in many hospitals throughout the region, but due to the specialist nature of the service we are not always able to see people in their nearest hospital. This is because some types of referral need to be seen by specific members of our team. We have clinics in the following hospitals; please click to access the hospital websites:

Leeds General Infirmary

Chapel Allerton Hospital, Leeds

Seacroft Hospital, Leeds

St James's University Hospital, Leeds

Airedale Hospital

Bradford Royal Infirmary

Bradford St Lukes

Calderdale Royal Hospital, Halifax  

Castle Hill Hospital, Hull

Dewsbury and District Hospital

Friarage Hospital, Northallerton

Harrogate District Hospital

Huddersfield Royal Infirmary

Hull Royal Infirmary 

Pinderfields General Hospital, Wakefield 

Pontefract General Infirmary

Scarborough District Hospital 

Scunthorpe General Hospital  

York District Hospital

How long will I have to wait?

As with all NHS services, wherever possible we will offer an appointment within the target times (18 weeks from referral date).

In some cases (e.g. in pregnancy) it is necessary to offer an appointment much more quickly than this.

What will happen at my appointment?

Appointments with Clinical Genetics usually last between 30 and 60 minutes, so there is plenty of time for you to ask questions.

Exactly what happens at the appointment will depend on the reason you were referred. In most cases we will:

  • Ask you about your own medical history
  • Ask about the medical history of your family and take a family tree (also known as a pedigree)
  • Discuss the reason you were referred in detail

In some cases, it may be necessary for a Genetics doctor to examine you.

Depending on the reason you were referred we may offer genetic testing. This is usually in the form of a blood test.

After your appointment, we will usually write to you summarising the information that was discussed in clinic.

Who will be at the appointment?

You will either meet a Clinical Geneticist (a Consultant, Specialist Trainee or GP with Special Interest) or a Genetic Counsellor/Nurse.

A Clinical Geneticist is a doctor with specialist training in genetics.

A Genetic Counsellor is a health professional who can give you information about genetic conditions and discuss with you the implications of genetic testing.

The type of appointment you will have depends on the reason you were referred.

We also have some clinics which are run jointly with other specialties. In these clinics there may be several different doctors, nurses or genetic counsellors that you will meet.

From time to time, we may also ask that a student or trainee health professional be present. You can ask that this person is not present, and it will not affect your care in any way.

What is genetic testing?

There are two main types of genetic tests; chromosome and DNA tests.

Chromosome tests

These tests usually look at all of our chromosomes (the structures which contain all of our genetic information or genes). The tests can show us if there are any missing or extra sections of chromosome, or if there are any rearrangements of the chromosomes. Results can take a few weeks.

DNA tests
These tests look at individual genes or groups of related genes. Genes are made up of a chemical code, and alterations in this code can cause genetic conditions.

Over the last 20 years scientists have identified many genes which are important in genetic conditions. This means that sometimes a genetic test can be offered when a particular condition is suspected.

If a diagnosis is confirmed in a family then it may be possible to offer testing to other family members. A genetics doctor or genetic counsellor will be able to discuss genetic testing with you in much more detail if it is relevant to you.

Please note, we only provide genetic testing to children where there is a suspected problem. This means we do not offer testing to children to see whether they will develop a genetic condition when they are an adult.

Will I be asked to take part in any research?

We often offer patients the chance to take part in research studies. These research studies are often designed to help us understand more about the way genetic conditions affect our health. A member of our team would always explain the nature of the research to you, so that you can decide whether you wish to participate. No research would be carried out without your consent. You are under absolutely no obligation to take part in research studies, and your care would not be affected if you decided not to.

What to expect from the prenatal genetics clinic

We hold a clinic once  a week in Leeds for pregnant women who have a concern about a genetic condition in relation to their pregnancy. Women and their partners/families come from all over the Yorkshire region for this clinic. This clinic is run jointly with a specialist fetal medicine obstetrician. Sometimes it is appropriate for the obstetrician to carry out an ultrasound scan (depending on the reason for your visit). In some cases this doctor will need you to return to the clinic in Leeds for a further visit, for instance if a test is planned in the pregnancy, or if a further scan is needed.

What to expect from the cardiac genetics clinic

We have a joint clinic with Adult and Paediatric Cardiologists for people with a family history of heart problems. This leaflet explains the Cardiac Genetics Clinic in detail.

What to expect from the Huntington’s Disease (HD) clinic

In our Huntington’s disease (HD) clinics we see people who may be showing signs of the condition, and also people who are well but may develop the condition in the future. Sometimes we discuss and offer genetic testing, which can tell a person whether they have HD or will develop it in the future. A number of appointments are required before having testing to allow a person to think about the many complicated issues surrounding HD testing.

Page updated: 14/02/2012 | Updated by: Katherine Thomas