Medical Oncologist
CION Cancer Clinics
Deciding not to test the pregnancy: a valid choice | CION Cancer Clinics
Choosing not to test a pregnancy for a family cancer gene is a common and fully accepted decision. Most inherited cancer genes raise risk in adult life, so many couples leave the question for their child to answer later. This page explains why families make this choice, what happens next, and who it does not suit. At CION Cancer Clinics, our team helps carriers and their families plan checks, next steps and support after a genetic result.
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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
- Is it all right not to test the pregnancy?
- The reasons families give for not testing
- What happens if you do not test
- The terms used in these conversations, in plain language
- Testing and not testing, compared honestly
- What this page cannot tell you
- Four things families tell us, and what is actually true
- Common questions about not testing a pregnancy
The short answer
Is it all right not to test the pregnancy?
Yes. Choosing not to test a pregnancy for a family cancer gene is a common, informed and fully accepted decision. Testing during pregnancy is offered, never required. Many carriers who hear every option decide to let the pregnancy continue without CVS or amniocentesis, and to leave the question for their child to answer later in life.
Why this choice is common with cancer genes
Most inherited cancer genes raise risk in adult life, not in childhood. A child who inherits the fault is born healthy and grows up like any other child. By the time the risk matters, that child can decide for themselves whether to be tested, and screening and prevention are available to them.
What the decision does not mean
It does not mean you are ignoring the risk or letting your family down. It does not close any door for your child. It simply means you have decided that testing during pregnancy is not the right step for you. A genetic counsellor will respect that without asking you to justify it.
You can still change your mind
Each test can only be done within a certain stretch of pregnancy. If you are unsure, tell your counsellor early, so that the option stays open while you think.
Not testing is a decision in its own right. It is not the absence of one.Why couples decide this
The reasons families give for not testing
Every family's reasons are their own. These are the ones genetic counsellors hear most often, and each is a sound reason.
The risk comes in adult life
A raised chance of cancer decades from now feels very different from a condition that affects a baby at birth. Many couples feel it is not a reason to test or to change the course of a wanted pregnancy.
The answer would not change anything
If you already know you would continue the pregnancy whatever the result, a test may add worry without changing a single decision. Some couples prefer nine months without that weight.
The procedure carries its own risk
CVS and amniocentesis each carry a small added chance of miscarriage. For a pregnancy that was hard to achieve, even a small risk can feel too much.
Other practical reasons
- Travel to a fetal medicine unit in the city
- Cost of setting up a family-specific test
- Faith and personal values
The child's own right to choose
Testing before birth answers a question the child might have wanted to answer themselves, or never ask at all. Leaving it until adulthood keeps that choice with them.
Deciding not to test is as informed a choice as deciding to test.Not sure whether this applies to you?
Ask an oncologistAfter you decide
What happens if you do not test
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Tell your counsellor and your obstetrician
A short conversation is enough. Ask for the family's genetic result to be noted in your pregnancy records so every doctor involved knows the history.
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Pregnancy care continues as normal
You have the routine scans and checks every pregnancy has. An inherited cancer gene does not change how the pregnancy is monitored or how the baby is delivered.
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Your child grows up like any other
For most cancer genes, nothing needs to happen in childhood. A few rare syndromes are different, because checks start young and genuinely help. Your counsellor will tell you if your family's gene is one of them.
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Telling your child, in stages
Many families share the family history gradually, in words suited to each age. By the time your child is an adult, the idea of a family gene should not come as a shock.
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Adulthood: their decision
As an adult, your child can see a genetic counsellor and decide whether to be tested. If they carry the fault, screening can begin at the age their doctors recommend.
Words you may hear
The terms used in these conversations, in plain language
- Prenatal diagnosis
- Testing a pregnancy that is already under way, by CVS or amniocentesis, for the family's known gene fault.
- Adult-onset
- A condition whose risk shows up in adult life rather than in childhood. Most inherited cancer genes are adult-onset.
- Predictive testing
- Testing a healthy person to find out whether they carry the family's fault. Usually offered to adults who can consent for themselves.
- Informed choice
- A decision made after hearing the facts and options clearly. Both testing and not testing can be informed choices.
- Carrier
- Someone who has an inherited gene fault but does not have cancer. A carrier is not a patient.
- Family letter
- A letter from the genetic service describing the fault, which you can keep for your child to take to their own doctor one day.
Side by side
Testing and not testing, compared honestly
If you test the pregnancy
If you do not test
You know during pregnancy whether the baby inherited the fault
The question is left for your child to answer as an adult
A small added miscarriage risk from the procedure
No procedure, so no added risk
Extra cost, travel and waiting for a result
Routine pregnancy care only
A decision to make after the result, whichever way it goes
No decision to make during this pregnancy
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Being straight with you
What this page cannot tell you
It cannot tell you which choice is right for your family. That depends on the gene involved, how the cancer has affected your relatives, your beliefs and your circumstances. What your specific variant means is a question for the counsellor who ordered the test, and they can help you weigh the choice without steering you.
It cannot promise how you will feel later
Some parents who do not test feel settled for good. Others feel a flicker of worry when their child reaches adulthood. Both are normal. Counselling is available at any point, including years after the birth, if those feelings become heavy.
Who this does not apply to
This page is about adult-onset cancer genes. If your family has one of the few syndromes that cause problems in early childhood, the advice is different. Your counsellor may recommend checks for the baby soon after birth, even if you decide not to test during pregnancy. Read about syndromes that need childhood testing.
Unsure which group your family's gene falls into? Ask the counsellor who gave you the result.Commonly believed
Four things families tell us, and what is actually true
"If we do not test, the doctors will think we are careless."
Genetic counsellors and obstetricians see this choice often and respect it. Your care will not change because of it, and you will not be asked to defend it.
"Our child will blame us for not finding out."
Many adults are grateful that the choice was left to them. What children tend to value most is being told honestly about the family history when they are old enough.
"Without a test we will never know if our child is at risk."
Your child can be tested as an adult with a simple blood sample. Nothing is lost by waiting, and the answer will be exactly the same.
"Once we decide, we cannot go back."
During pregnancy there is a window for each test, and you can ask for testing within it. For future pregnancies, you can make a different choice every time.
Questions we are asked
Common questions about not testing a pregnancy
Do I have to tell anyone that I have decided not to test?
Only your counsellor and obstetrician need to know, so they can plan your care. Your wider family does not need to be told. Many couples keep the decision private to avoid pressure from relatives.
Will not testing affect how the baby is delivered?
No. An inherited cancer gene does not change the choice between a normal delivery and a caesarean, or how labour is managed. Delivery is planned on the usual obstetric grounds, exactly as for any other pregnancy.
Can the baby be tested at birth instead?
For most adult-onset cancer genes, testing is not recommended in childhood. It is usually kept for when your child is an adult and can decide. The exception is the small group of syndromes where checks begin early and help the child.
What if my partner wants to test and I do not?
Disagreement is common. A joint session with a genetic counsellor can help you both hear the same facts and name what worries each of you. The decision about any procedure during pregnancy rests with the pregnant woman.
Can we choose differently in a future pregnancy?
Yes. Every pregnancy is a fresh decision. Some couples do not test the first time and choose embryo testing or prenatal diagnosis later, or the other way round. Talk to your counsellor before each pregnancy so the options are ready.
When should we tell our child about the family gene?
Many families start with simple, honest words in childhood and add detail over the years. By early adulthood, your child should know enough to decide about testing. A counsellor can help you plan what to say at each age.
Does not testing affect insurance for the child?
An untested child has no genetic result on record. India has no dedicated law on genetic discrimination, so it is a fair question to raise with a counsellor when your child is older and considering a test.
Who can we talk to if we are still unsure?
Your genetic counsellor is the right first person. You can also call the CION helpline and ask for a counselling appointment to discuss family planning after a result, in Telugu if you prefer.
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
- MedlinePlus — Prenatal Testing
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
- NHS — Predictive genetic tests for cancer risk genes
- MedlinePlus Genetics — What is genetic counseling?
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
Having children anyway: a legitimate choiceWhy conceiving without testing is a sound decisionCVS and amniocentesis: what each involvesWhat testing would involve, if you reconsiderWhy most adult-onset genes are not tested in childhoodWhy your child's test can wait until adulthoodCounselling for couples making this decisionTalking it through together with a counsellor
Talk to us
Want to talk it through before you decide?
A genetic counsellor can go over your options with you, without pressure, and respect whatever you choose. One helpline serves every CION centre.