Frequently Asked Questions

These is a list of the questions many people ask. If you do not find the answer to the question you wish to ask then please get in touch with us and we will try our best to explain.

How can I arrange for someone to visit me at home?

Just give one of the Genetics Team a call or fill in our contact form with your details and we will be in touch with you. A member of the team who works in the area you live in will be happy to visit you at a mutually convenient time and day.

Will there be a charge for you to visit me at home?

The Genetics Team service is funded by East Lancashire NHS which means it is a free service for everyone. There is no charge for home visits or for appointments in the genetics clinic at your local hospital.

My parents don’t speak English very well but would like to know more about genetics as we have several people in our family with disabilities, what can we do?

The Genetics Team can also speak Punjabi, Urdu and Gujarati between them so if your parents would prefer to communicate in one of these languages, the Genetics Team would be more than happy to pay them a visit with some more information.

If I share my health history with you do you have to tell the rest of my family?

Any information that you share with us about your health history is strictly confidential between you and the service. The Genetics Team will not share anything that you tell us with any other members of your family without your approval.

How can my child have a genetic condition when both parents are healthy?

Your child may have a recessive condition which could explain why both parents are healthy. We all have two copies of each gene, we get one copy from mum and one from dad. As long as one of those copies is healthy, we will not be affected with the recessive genetic condition as the healthy gene will work extra hard and do the work for the changed gene. Therefore it may be that you and your partner have one healthy and one changed gene which means that you will both be healthy but still carry a changed copy of the gene (healthy carriers). There is then a 25% chance you will both pass on your changed gene to your child and if so your child will be affected with the genetic condition. This is because your child has inherited two changed genes (one from mum and one from dad) which means there is an absence of a healthy one to do the work. Therefore it is possible for both parents to be healthy and still have a child with a genetic condition.

We appreciate that this can sometimes be very confusing and difficult to understand. If you are parents of a child with a genetic condition and have questions around this topic please get in touch with one of the Genetics Team. We will be more than happy to visit you at home to explain it to you in easy to understand terms illustrated with pictures and answer any more questions you may have.

To view a simple picture of how this works, please click here

I was told I am a carrier of a particular changed gene for a recessive condition, does that mean I have a bit of the condition?

If you are a carrier of a particular changed gene for a recessive condition you also have a healthy copy, as we all have two copies of each gene. Because you have a healthy copy it means that this gene will work for the both of them. This means you are not affected and do not have a bit of the condition and so you are a “healthy carrier”. You need to have two changed genes to have the disorder and so it is not possible to have ‘a bit’ of a recessive condition.

I am planning on marrying my first cousin and my niece has a genetic condition, should we be worried?

If you are aware of a genetic condition within your family it would be advisable to get in touch with us. If your niece has a recessive genetic condition, there is a chance that you or your future partner could be carrying a gene for the condition as well. An appointment with the genetic counsellor and a simple blood test is all it takes to find out if you are carriers of the affected gene. If none of you or only one of you is a carrier then you have no need to worry at all. However if both of you are carriers then it may mean your future children could be affected (remember this scenario only applies if your nieces condition is recessive). In this case the genetic counsellor can discuss with you what this may mean for you and what options are available to you. However just because your niece has a genetic condition does not automatically mean that you should be worried as there are many other factors to take into account. Please get in touch with us so that we can provide you with more information.

Many members of my family are married to cousins and I am planning on getting married soon. Is there anything I should be worried about and who can I talk to?

Marriage within families is quite common in some cultures and usually poses no risk. However if there are people within your family affected with a genetic condition, or if there are multiple people in your family with disabilities or learning difficulties, then it could be that there is a genetic condition in the family. In this case you marrying your cousin could increase the chances of your future children being affected with the condition. However it does not automatically mean that your children will be affected, just that the chance of it happening is increased as there is a higher chance of you both carrying the changed gene. You can talk to the Genetics Team who will provide you with more information and are happy to visit you at home. If there are affected people within your family then you can see the genetic counsellor who may be able to offer you some tests and further advice.

There are several members of my family with a genetic condition. I am healthy but am scared I may pass it on to my children. Can someone help me with this?

As there are many different genetic conditions your risk of passing it to your children would depend on which genetic condition/s runs in your family. Don’t hesitate to get in touch with one of our team who will visit you at home to take some information about your health history. Depending on the genetic condition/s in your family an appointment with the genetic counsellor can be arranged who if needed may do some tests to be able to advise and support you further.

Planning for a Baby

Most pregnant couples will not need a referral to a Clinical Genetic Service during pregnancy but there are some situations where it is important to understand if a baby is at risk of having a genetic condition/illness.

This may be because:

  • There is a family history of a condition (such as in a parent, a sister or brother or a cousin or uncle/aunt or any of the extended family.

OR

  • Screening tests such as a blood test or antenatal scans during pregnancy may indicate a possible genetic condition/ health problem in the baby.

The Genetics Team are very experienced doctors or counsellors who provide up to date information about genetic conditions and what it might mean for families.

If you are worried about any genetic conditions or illnesses which run in your close or wider family, it is really important that you contact your GP or Community Midwife as early as possible in pregnancy. They can contact the Clinical Genetic service in Manchester, or the Antenatal and Newborn Screening Midwife at your local Maternity unit who will facilitate the referral for an appointment with a Genetic counsellor or Doctor.

Sometimes, you might be offered a referral to the Genetic services if something has been detected (picked up) as part of routine antenatal screening such as a scan. The screening midwife/ obstetric (antenatal ) doctor would discuss your results before offering you the referral.

Once referred to Clinical Genetics, the team would discuss any possible risks for your pregnancy, any available genetic tests and all your options. They will also work with the local /specialist obstetric and neonatal (baby doctors) teams to put in place an appropriate management plan for the pregnancy and birth.

Thinking about your pregnancy being at risk from a genetic problem can be a difficult and anxious time. Our aim is to support parents by giving them enough specialist information to make their own decisions both for the pregnancy and their families.

For more information:

General information about the NHS Clinical Genetic services can be found at:

http://www.nhs.uk/Conditions/Genetics/Pages/genetic-testing-and-counselling.aspx

The support group, Antenatal Results and Choices (ARC) provides support to women making a decision in pregnancy.

https://www.arc-uk.org/

What if I am Pregnant?

Most pregnant couples will not need a referral to a Clinical Genetic Service during pregnancy but there are some situations where it is important to understand if a baby is at risk of having a genetic condition/illness.

This may be because:

  • There is a family history of a condition (such as in a parent, a sister or brother or a cousin or uncle/aunt or any of the extended family.

OR

  • Screening tests such as a blood test or antenatal scans during pregnancy may indicate a possible genetic condition/ health problem in the baby.

The Genetics Team are very experienced doctors or counsellors who provide up to date information about genetic conditions and what it might mean for families.

If you are worried about any genetic conditions or illnesses which run in your close or wider family, it is really important that you contact your GP or Community Midwife as early as possible in pregnancy. They can contact the Clinical Genetic service in Manchester, or the Antenatal and Newborn Screening Midwife at your local Maternity unit who will facilitate the referral for an appointment with a Genetic counsellor or Doctor.

Sometimes, you might be offered a referral to the Genetic services if something has been detected (picked up) as part of routine antenatal screening such as a scan. The screening midwife/ obstetric (antenatal ) doctor would discuss your results before offering you the referral.

Once referred to Clinical Genetics, the team would discuss any possible risks for your pregnancy, any available genetic tests and all your options. They will also work with the local /specialist obstetric and neonatal (baby doctors) teams to put in place an appropriate management plan for the pregnancy and birth.

Thinking about your pregnancy being at risk from a genetic problem can be a difficult and anxious time. Our aim is to support parents by giving them enough specialist information to make their own decisions both for the pregnancy and their families.

For more information:

General information about the NHS Clinical Genetic services can be found at:

http://www.nhs.uk/Conditions/Genetics/Pages/genetic-testing-and-counselling.aspx

The support group, Antenatal Results and Choices (ARC) provides support to women making a decision in pregnancy.

https://www.arc-uk.org/

My GP has talked to me about attending a genetic clinic as my son has a genetic condition. Why should I go to it when my GP is already looking after my child?

Your GP will have suggested attending a genetics clinic as there you will be able to speak to genetic counsellors/doctors who are specialised in the field of genetics. This means that they have more contact with patients who have genetic conditions as well as more in depth training on the particular subject as it is their speciality. Your GP will still be looking after your child and their general health however specialists at a genetics clinic may be better suited to help you with the genetic condition.

I have heard that when people attend genetics clinics they are pressured into making difficult decisions, is this true?

This is a common misconception and one that does unfortunately influence people’s decisions in attending genetics clinics. At no point in your contact with any member of the genetics service should anyone try to influence or pressure you into making any decisions. The aims of genetic counselling is for you to be given all the information that applies to you and your family so that you can make well informed decisions of your own. If you are hesitant in attending a genetics appointment due to concerns around issues like this then please get in touch with the Genetics Team. They will be happy to answer any questions and offer you the support that you may need.