What is Genomic Testing?
A genomic sequencing test aims to identify changes, or ‘variants’ in any of the large number of genes in your genome that may affect your health.
What is whole gemone sequencing?
Whole genome sequencing refers to genetic testing that looks for variations in the whole genome (all genes and the regions in between) rather than looking at just one or a few genes.
How might whole genome sequencing help my child who has been diagnosed with cancer?
Whole genome sequencing is becoming a more affordable option to support children & adolescents diagnosed with cancer.
While there is much to learn about the impact of whole genome sequencing, it can help us identify more targeted treatments, understand which children might be more likely to suffer from health problems caused by chemotherapy and radiotherapy, support increased access to clinical trials and help scientists discover why some children get cancer.
Why should I donate my child’s sample?
You may wish to donate your child’s sample to inform your child’s current and future treatment, as a ‘just in case we need it’ scenario or simply offer hope to your child, and other children and young people who will be diagnosed in the future.
How much will the whole genome sequencing cost?
When donating with Australian Families 4 Genomics (via Count Us In), there is zero cost for the patient and family. The cost will be covered by Australian Families 4 Genomics (via Count Us In) from funding and donations. The funds required to store the sample and counsel patients and families through the process of donation, will also be covered by Australian Families 4 Genomics (via Count Us In).
Where will the sample for the whole genome sequencing be taken from?
Ideally during the diagnosis process, when other tissue samples (for example: tumour, blood, bone marrow, cerebrospinal fluid) are routinely being collected for cancer type diagnosis and staging, miniscule amounts of additional tissue will be secured.
How will the data collected from the whole genome sequencing be used?
With families consent, the data will be used to create a open access, universal data bank that clinicians and medical researchers can access to further unravel the mystery of why children get cancer, and who is likely to respond well (or not so well) to current treatment protocols. There is also hope that this information will help, and add to the existing literature base to minimise and prevent the significant number and severity of side and late term effects.
When is the best time to secure the sample for whole genome sequencing?
Australian Families 4 Genomics (via Count Us In) are advocating for the sample collected for whole genome sequencing to be taken as early as possible. This is to facilitate the ease of collection for the child or young person (no additional procedures), and so the family can have access to the data generated from the child’s whole genome sequencing as soon as possible for decision making, if they so desire.
This is in line with how health jurisdictions already collect other tissue samples.
Who owns the tissue sample (and data) that is donated to Australian Families 4 Genomics (via Count Us In)?
When you donate and collaborate with Australian Families 4 Genomics (via Count Us In), the patient and family own the tissue sample. In many Tissue Banks, access to the sample is controlled by the lab or the researcher once donated. In the past, there have been some cases (such as relapse, or a secondary cancer) where the family needs to have access to the stored tissue, and has been unable to do so easily. Australian Families 4 Genomics (via Count Us In) believes that the tissue sample should remain the property of the individual patient and their family.
The data generated from the Whole Genomic Sequencing will always be available to the patient and their family, so this precious information can be re-explored and built upon as more is learnt about the genetics of childhood cancer.
Why is Australian Families 4 Genomics (via Count Us In) requesting that we donate a sample for whole genome sequencing?
Australian Families 4 Genomics is asking for a donation of your tissue/blood to help clinicians and medical researchers unlock data that may help children and young people receive a more personalised treatment, as well as potentially identify side effects from treatment, that might be preventable (and/or managed better). Additionally, contributing to the Australian Families 4 Genomics Universal Data Bank, holds the possibility of helping other children diagnosed with cancer.