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Testing a child or waiting: when your child should decide | CION Cancer Clinics
If a syndrome can cause cancer in childhood and early checks help, children are usually tested young. If the risk only begins in adult life, testing usually waits until the child can decide for themselves. This page explains how genetic counsellors make that call, why waiting protects a child's future choices, and how a teenager's own view is weighed alongside the parents'. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Should a child be tested now, or wait until they can choose?
- Which inherited conditions are tested in childhood?
- How the decision is usually made
- The terms counsellors use, in plain language
- Reasons to test now and reasons to wait
- What this page cannot tell you
- Four things parents often say, and what is actually true
- Common questions about testing children
The short answer
Should a child be tested now, or wait until they can choose?
It depends on when the risk begins. If a syndrome can cause cancer in childhood, and early checks genuinely help, testing in childhood is usually advised. If the risk only begins in adult life, testing usually waits until the child is old enough to decide for themselves.
The one question that decides it
Would a positive result change anything for this child before they grow up? If the answer is yes, because scans or other care would start young, the child is usually tested. If the answer is no, the test gives the parents information but gives the child nothing except a label they did not choose.
Why waiting protects the child
A genetic result is permanent and personal. It can shape how a child sees their future, how relatives treat them and, in many Indian families, how marriage talks go. Waiting keeps that choice open for the adult they will become. Some adults decide they never want to know, and that is their right.
When waiting would be harmful
For a few syndromes, waiting means missing a tumour that could have been found small. In those families, testing the child is an act of care, not an intrusion. A genetic counsellor helps you work out which situation your family is in.
Three groups of syndromes
Which inherited conditions are tested in childhood?
Counsellors sort syndromes by when the first useful action would begin. The child's age at testing follows from that.
Usually tested in childhood
Syndromes where tumours can appear in young children and early checks make a real difference. A negative result also spares a child years of unnecessary scans.
Examples
- Inherited retinoblastoma, an eye cancer of infancy
- Li-Fraumeni syndrome, linked to the TP53 gene
- Familial adenomatous polyposis, which causes bowel polyps
- Von Hippel-Lindau syndrome and some forms of MEN
Usually left until adulthood
Syndromes where the raised risk belongs to adult life and nothing would be done differently in childhood. Here the young person decides.
Examples
- BRCA1 and BRCA2 faults
- Lynch syndrome
- Most moderate-risk genes
The grey zone
Some conditions sit in between. The evidence for early checks may be thin, or the syndrome may vary widely between families. These decisions are made case by case with the counsellor, and it is fine to ask for a second opinion.
What deciding means for a teenager
An older child cannot legally consent in India, but their agreement still matters. Teams listen to a teenager who clearly does not want a test that could wait, and they give weight to that view.
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How the decision is usually made
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The counsellor confirms the family fault
Children are tested for the exact fault already found in a relative. Without a known family fault, predictive testing in a child is rarely useful.
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They ask when the first useful check would start
If surveillance for this syndrome begins in childhood, testing is usually timed shortly before it. If nothing would start until adult life, the test is usually deferred.
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They talk with the parents about their reasons
Parents often want certainty, which is natural. The counsellor helps separate what the child needs from what would ease the parents' worry.
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They talk with the child, at the child's level
Even a young child can be told something true and simple. An older child is asked what they think, and their answer is recorded.
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The decision is written down, with a date to revisit
Deferring is not refusing. The family is told when to come back, and the young person is offered the test directly once they are an adult.
Words you will hear
The terms counsellors use, in plain language
- Predictive test
- A test in someone who is well, looking for a fault already found in a relative. It tells you about future risk, not present illness.
- Consent
- Legal permission for a test. For a child in India, a parent or guardian gives it until the child turns eighteen.
- Assent
- The child's own agreement, given alongside the parent's consent. It is sought whenever the child is old enough to understand.
- Childhood-onset
- A syndrome whose tumours can appear in childhood. Testing children is usually advised for these.
- Adult-onset
- A syndrome whose raised risk begins in adult life. Testing usually waits for the young person to choose.
- Open future
- The idea that a child should reach adulthood with as many choices still open as possible, including the choice not to know.
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Side by side
Reasons to test now and reasons to wait
Test in childhood when
Wait for adulthood when
Tumours can appear in young children
The raised risk begins only in adult life
Screening would start before adulthood
Nothing would change until the child grows up
A negative result ends years of scans
A result would mainly settle the parents' worry
Early action can prevent or catch a cancer
The young person may later prefer not to know
Being straight with you
What this page cannot tell you
It cannot tell you whether your child should be tested. That depends on the exact gene, the exact variant, how the syndrome has behaved in your family and what checks exist for children with it. A genetic counsellor weighs those together with you, and the answer may differ between two children in the same family if they are very different ages.
It cannot read a relative's report for you
The family fault decides everything here. What a specific variant means is a question for the counsellor who ordered the test. Bring the relative's report, or a clear photo of it, to the appointment.
Who this does not apply to
Most children in most families never need a genetic test. If no fault has been found in a relative, or the family history is of one cancer at an older age, there is usually nothing specific to test a child for. A child who is already ill with cancer is in a different situation, and testing may be part of their treatment planning.
Commonly believed
Four things parents often say, and what is actually true
"As parents, we have a right to know our child's genes."
Parents decide what is best for their child's health. When a result would not change any care in childhood, counsellors see the result as belonging to the future adult, and usually advise waiting.
"Testing early means we can protect them sooner."
Only when there is something to do early. For adult-onset syndromes, nothing is done in childhood whatever the result, so early testing adds worry without adding protection.
"If we wait, the child will forget and never get tested."
This is a fair worry. It is solved by recording the family fault clearly, keeping the relative's report safe, and telling the child about it gradually as they grow up.
"Knowing early will help with arranging a marriage."
A result obtained for that reason is not for the child's health, and it can do real harm. The young person should decide who learns their result, and when.
Questions we are asked
Common questions about testing children
At what age can my child decide for themselves?
Legally, an Indian child can consent to a test on their own once they turn eighteen. In practice, counsellors involve children much earlier and give real weight to a teenager's view. For adult-onset syndromes, the test is usually offered directly to the young person once they reach adulthood.
My sister carries a BRCA fault. Should my daughter be tested now?
Usually not while she is a child. BRCA faults raise risks that belong to adult life, and nothing would change in her childhood whatever the result. She can decide for herself as a young adult, ideally with a counsellor, before any adult screening would begin.
Why would a baby be tested for retinoblastoma?
Because the tumours can appear in the first years of life and regular eye checks from birth find them early. A negative result means the child can stop those examinations. Here, testing a very young child clearly helps them.
Can we test our child privately without telling anyone?
Some laboratories will accept a sample, but a test without counselling is not advised for a child. The counsellor makes sure the right fault is tested and the result is explained properly. Private testing also skips the question of whether the test should be done at all.
What if my teenager refuses a test the doctors recommend?
Listen to the reasons first. Fear of needles, fear of the result and worry about friends finding out are all common. A counsellor can meet the teenager alone. For childhood-onset syndromes, the team will explain gently why the checks matter now.
Will the test be different when my child is older?
The test itself looks for the same family fault, usually from a blood or saliva sample. What changes is who gives permission and who receives the result. As an adult, the young person gets the result directly and chooses who to share it with.
Does waiting mean my child is not being looked after?
No. For adult-onset syndromes, there are no special childhood checks to miss. Ordinary healthy habits and routine care are what matter until adulthood. Deferring the test is a plan, with a date to return to it.
Who can help us decide?
A genetic counsellor or clinical geneticist, ideally one who works with children. Counselling in Telugu can make these conversations easier for grandparents too. Call the CION helpline if you are not sure where to start, and someone will guide you to the right clinic.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- American Society of Human Genetics — Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents
- NHS — Predictive genetic tests for cancer risk genes
- MedlinePlus Genetics — What is informed consent?
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Should healthy siblings be tested?When a brother or sister needs the same testExplaining a genetic result to a childWhat to say, at each ageSurveillance programmes for predisposed childrenThe checks that make childhood testing worthwhileTransition from paediatric to adult genetics careWhen the result becomes your child's own
Talk to us
Not sure whether your child needs testing now?
Tell us which fault was found in your family and how old your children are. We will explain whether testing now helps and arrange counselling if it does. One helpline serves every CION centre.