Talking about cancer genetics

with the family

Demetra Georgiou

Cancer Genetic Counsellor

We will discuss:

• Why it is important to disseminate genetic information

• When is it a good time to talk about it?

• Who needs to know?

• How do I talk about it?

• Can someone help?

Why is it important to inform the family?

• Genetic information usually affects more than one individual

• There may be options relatives could benefit from

• It may be helpful for everyone-open communication enables a supportive network

I feel it is so hard to talk about genetics

• Genetic information can be very complex scientifically

• ..it can also be complex emotionally

Imagine you are going to the airport….

• You have booked flights for the whole family

• Booked a nice hotel

• Everyone has been looking forward to the two week holiday

• You have prepared everything and have left early enough to be at the airport 2 hours early

And you come across this…

But there may be other options..

What could make it easier?

How do I do it?

• Be yourself!

• Take time. Get help if uncomfortable

• Be aware that your relatives may want to deal with the news and their options differently

• It is important to inform about the risks along with the options that may be available

• Choose an appropriate time and place (ideally somewhere private and quiet at a time that is convenient for everyone)

Do young children need to know?

• Studies have shown that most children would find it beneficial to know (involved in family discussions, trust in parents, empowerment of coping mechanisms)

• Secrecy may increase anxiety in children

• Most parents feel relieved after disclosure

• How old is old enough?-gradual approach

Adapted by Patenaude et al, 2012 and Holt 2006

Common concerns/questions Parental advice

Burden on parents of not telling Assess children’s vulnerabilities. There is relief in telling. If

not ready, It maybe helpful to plan when and how you will

inform.

Fear child may overhear test result Inform child as soon as you are comfortable

Do I know enough scientific information? Get help from relatives, help professionals or support

groups such as the National Hereditary Breast Cancer

Helpline

How to tell children? Telling all children together may not recognize differences

in strengths, vulnerabilities of each child or differences age

makes in consideration of implications of information

Desire to be honest, but not overwhelming to

children

Initial talk doesn’t have to tell all about genetic information.

Can introduce, and continue with a gradual approach based

on the child’s questions and understanding

Is the child mature enough? There is no real answer on a “suitable age”. Parents are best

suited to assess children’s maturity. A step by step process

(as above) may help

Concern about distressing child Important to stress positive, constructive ways in which

genetic information can reduce cancer risk in the future

Children need preparation for possible future

parental cancer diagnosis

Telling about genetic test result may immunize children,

help prepare them for and reduce shock of possible parental

illness

Prophylactic surgery may prompt telling test

result

It may be best to inform children in advance as they may

need time to adjust to this news

How do I help my child make informed

decisions on lifestyle/health care?

Encourage open communication. Inform child on benefits

of lifestyle changes and screening. Allow some time for

your child to process information and ask questions. Your

coping mechanisms and lifestyle are likely to influence

your child.

When to postpone/avoid dissemination

• If you are concerned over your relative’s health or wellbeing

• If you feel that the information is more likely to cause damage in the short term (such as prior to job interview, exams, birthday etc)

• When you are not certain whether it is relevant for your relative

• If a relative has noted they do not wish to know genetic information

Who can help me?

• Another relative or a partner

• Your genetic counsellor or clinical geneticist

• Support groups

• Leaflets and website resources

Thank you!

• Any questions?

References

• Holt K. (2006). What Do We Tell the Children? Contrasting the Disclosure Choices of Two HD families Regarding Risk Status and Predictive Genetic Testing. Journal of Genetic Counseling15 (4):253-265

• Forrest Keenan K., Teijlingen E., McKee L., Miedzybrodzka Z., Simpson S. A. (2009) How young people find out about their family history of Huntington’s disease. Social Science & Medicine68 (10):1892–1900

• Knoppers B. M. (2002). Genetic information and the family: are we our brother’s keeper? Trends in Biotechnology20 (2):85-86

• Patenaude A F, DeMarco T A, Peshkin B N, Valdimarsdottir H, Garber J E, Schneider, Larissa Hewitt K A, Hamilton J, Tercyak, K P. (2012) Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice.