Medical Oncologist
CION Cancer Clinics
The right not to know your genetic risk | CION Cancer Clinics
You have the right not to know. Nobody can make you have a predictive genetic test, and you can ask not to hear a result even after giving a sample. This page explains what that right covers, how to decide whether you want to know, what you give up either way, and why the choice can get complicated when relatives are tested too. 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
- Do you have the right not to know your genetic risk?
- What exactly can you choose not to know?
- How do you decide whether you want to know?
- The words you will meet, in plain language
- What changes if you know, and if you do not?
- What this page cannot tell you
- Four things people assume, and what is actually true
- Common questions about the right not to know
The short answer
Do you have the right not to know your genetic risk?
Yes. Nobody can make you have a predictive genetic test, and you can decline to hear a result even after a sample has been taken. International ethics guidance recognises this choice, and a good counsellor will respect it without pressure.
What the right protects
It protects your freedom to plan your life without information you did not ask for. Some people feel that knowing would take over their thoughts. Others simply want to wait for a better time, such as after exams, a wedding or the birth of a child. Both are reasonable. India has no law written specifically about genetic information, so the choice rests on the general rule that any test needs your informed consent.
Where it gets complicated
Genetic information is shared by blood relatives. A result in one person can say something about another. If your child tests positive for a fault known to come from your side, that can point to you. Identical twins share every gene. Your wish not to know is real, but in some families it needs careful handling by a counsellor.
Choosing not to know is a decision, not a failure to decide. It can be revisited at any time.Your choices
What exactly can you choose not to know?
The right not to know is not all or nothing. It covers several separate choices, and you can make each one differently.
Whether you carry the family fault
You can decline predictive testing entirely, even when a close relative has a known fault. You can still be watched through screening based on your family history.
A result that already exists
If you gave a sample and then changed your mind, you can ask for the result to be held and not given to you. Tell your counsellor as early as possible, before the result session is booked.
Extra findings from a large test
Bigger tests can turn up faults unrelated to the reason you were tested. At the consent stage, you can choose not to be told about these secondary findings.
Ask how this choice is recorded on your consent form.Details about a relative
You can tell brothers, sisters and parents that you do not want to hear their results. Most families can respect this once it is said clearly and early.
Not sure whether this applies to you?
Ask an oncologistThinking it through
How do you decide whether you want to know?
Talk before any sample is taken
Pre-test counselling exists for this decision. The counsellor explains what a positive or negative result would change, and what it would not. You can leave without giving a sample.
Ask what knowing would change now
Would a result change your screening, your treatment or a family decision in the near future? If nothing would change for some time, waiting can be a sensible choice.
Think about timing
Board exams, a marriage, a pregnancy or caring for an ill parent can all make this the wrong moment. Choosing a later time is still a way of taking the question seriously.
Tell the people who might share
If you decide not to know, say so to relatives who have been tested. It stops a result reaching you by accident at a family function or on a phone call.
Put a date to revisit it
The decision is not permanent. Agree with your counsellor when you might look at it again, so it stays your choice and does not simply drift.
On your consent form
The words you will meet, in plain language
- Predictive test
- A test for a well person, looking for a fault already found in the family. It predicts risk. It does not diagnose cancer.
- Informed consent
- Your agreement to a test after its purpose, limits and possible results have been explained. No consent, no test.
- Secondary findings
- Faults found by chance that are unrelated to the reason you were tested. You can opt in or out of hearing them.
- Deferring a result
- Asking for a result to be held and given to you later, or not at all.
- Withdrawing consent
- Changing your mind after agreeing to a test. You can ask for the sample not to be tested, or the result not to be released.
- Cascade testing
- Offering testing to relatives one step at a time once a fault is found. Each relative decides for themselves.
Side by side
What changes if you know, and if you do not?
Choosing to know
Choosing not to know
Screening can be matched to your result
Screening follows your family history instead
The uncertainty ends, whichever way it goes
The uncertainty continues, and many live with it well
A negative result can end years of worry
Worry may stay, but a feared answer is avoided
Once heard, a result cannot be unheard
The choice can be revisited at any time
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Being straight with you
What this page cannot tell you
It cannot make the choice for you, and it cannot tell you what a result would mean for you. That depends on the gene, the variant and your own history. What a specific variant in your family means is a question for the counsellor who ordered the test, and pre-test counselling is the right place to weigh it.
It cannot control what relatives do
You can ask relatives not to share their results with you. You cannot stop them making their own choices, including telling their own children. A counsellor can help a family agree ground rules that respect everyone.
Who this does not apply to
If you already have cancer and a germline result could change your treatment, the balance is different. You still have the right to decline, but your oncologist will explain what option you might be giving up. Testing the tumour itself is a separate question, covered under targeted therapy. For children, the right not to know is the reason most adult-onset testing waits until they can decide for themselves.
Commonly believed
Four things people assume, and what is actually true
"Not wanting to know is irresponsible."
It is a recognised choice. Many people who decline testing still attend screening based on their family history, which protects them without a result.
"Once my sample is taken, I have to hear the result."
You can ask for a result to be held, and you can withdraw consent. It is easiest if you tell your counsellor before the result is ready.
"If one relative tests positive, the whole family must be told everything."
Each person decides what they want to hear. Relatives can be told that a fault exists and that testing is available, without anyone being forced to learn their own status.
"If I say no now, I can never find out later."
You can usually be tested later, as long as the family fault is on record. Ask your relative or counsellor to keep the report safe so the test remains possible.
Questions we are asked
Common questions about the right not to know
Can I refuse a genetic test my doctor recommends?
Yes. A genetic test needs your informed consent, and you can say no. Your doctor should explain what the test could change, so your decision is an informed one. If you decline, ask what screening you should have based on your family history instead.
Can I have the test but not hear the result?
Yes. Some people want the result stored for later, or want it to guide a relative's care without hearing it themselves. Make this clear to your counsellor before the sample is sent, and ask how the result will be kept and who can access it.
My sister wants to tell me her result. Can I ask her not to?
Yes. Tell her kindly and clearly that you are not ready. She may still want you to know that a family fault exists, and that testing is available if you ever want it. That much is usually shared so you can decide for yourself later.
If I am not tested, can I still have screening?
Yes. Doctors can plan screening from your family history alone. It may be more cautious than a plan based on a result, because they cannot rule the fault in or out. Ask your oncologist what checks make sense for someone in your position.
Will my child's test reveal whether I carry the fault?
Sometimes. If your child tests positive for a fault known to run on your side, it strongly suggests you carry it too. This is one reason counsellors talk to parents before testing an adult child. Raise it early if you do not want to know.
Does choosing not to know protect my insurance?
It avoids having a result to disclose, but proposal forms may still ask about family history, which you must answer honestly. Indian rules on genetic information in insurance are not settled. Raise the question with your counsellor before testing rather than afterwards.
I have cancer. Can I still decline inherited testing?
Yes. But in some cancers an inherited result opens up treatment options, and it can also help your relatives. Ask your oncologist what you would be giving up. The choice remains yours once you have that information.
Can I change my mind later and ask to be tested?
Yes, at any time. If the family fault is already known, a test for that single change is usually straightforward. Call the CION helpline when you are ready, and a counsellor will go through the decision with you again first.
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)
Medical Oncologist
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Sources
- UNESCO — Universal Declaration on the Human Genome and Human Rights
- MedlinePlus Genetics — What is informed consent?
- National Cancer Institute — Cancer Genetics Risk Assessment and Counseling (PDQ) – Health Professional Version
- NHS — Predictive genetic tests for cancer risk genes
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
Deciding whether you want to knowA closer look at weighing the decisionTalking to someone who refuses to be testedThe same right, seen from the relative's sideWhen the family wants it kept secretWhere not knowing and not telling overlapWaiting for a predictive test resultIf you decide you do want to know
Talk to us
Not sure whether you want to know?
A pre-test counselling session can help you weigh the choice without any obligation to be tested. Tell us your situation and we will arrange one. One helpline serves every CION centre.