Medical Oncologist
CION Cancer Clinics
Choosing not to act on a genetic result | CION Cancer Clinics
Yes, you can decide not to act on a genetic result, and a good genetic service will respect that. Declining surgery or a preventive medicine is a legitimate choice, and most people who make it still keep some screening. What matters is that you choose knowing what it means. This page explains the kinds of not acting, what you keep and give up, and how to come back later. 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 to decide not to act on a genetic result?
- Four different decisions that all get called doing nothing
- How do I make sure not acting is a choice, not an accident?
- The terms doctors use, in plain language
- What you keep, and what you give up
- What this page cannot tell you
- Four things people tell us, and what is actually true
- Common questions about deciding not to act
The short answer
Is it all right to decide not to act on a genetic result?
Yes. Choosing not to have surgery, not to take a preventive medicine, or not to act yet is a legitimate decision, and a good genetic service will respect it. What matters is that the choice is made knowing what it means, not made because nobody explained the options.
Not acting is rarely doing nothing
Most people who decline surgery or medicine still keep some form of surveillance, and still watch for symptoms. That is a real plan, and for many genes it is the one guidelines start with. Declining one option does not mean declining all of them.
Why people choose this
The reasons are as varied as families. Some are older, or have other illnesses that matter more. Some carry a gene with only a moderately raised risk. Some are still absorbing the news. Some weigh the side effects of surgery or tablets and decide the trade is not worth it for them. Each of these is a reasoned choice, and none of them needs defending to anyone.
You can change your mind later. A decision not to act today is a decision for today.What not acting can mean
Four different decisions that all get called doing nothing
Families often lump these together. Your counsellor will treat each one differently.
Declining surgery, keeping screening
This is the most common choice. You keep the scans and checks your gene calls for, and you revisit surgery only if your view or your situation changes.
Declining a preventive medicine
Tablets such as tamoxifen or aspirin lower risk but bring side effects. Saying no to them leaves your screening plan exactly as it was.
Pausing everything for now
Some people need time before they can face any appointment. That is understandable. Agree a date to come back, so a pause does not quietly become years without checks.
Not acting on an uncertain result
If your report shows a variant of uncertain significance, not acting is the right response, not a risky one.
- No surgery or medicine should follow it
- Care is planned on your family history
- Ask how you will hear if it is reclassified
Not sure whether this applies to you?
Ask an oncologistMaking the decision well
How do I make sure not acting is a choice, not an accident?
Hear the risk for your gene, in plain numbers
Ask your counsellor what your risk looks like with each option and with none. A decision is only yours if you understood what you were weighing.
Decide what you will still do
Name which checks you will keep, if any. Even a simple plan, such as knowing the symptoms to report, is better than an open question.
Ask for it in writing
A short letter recording your decision and your plan helps any doctor you see later, including in a district hospital far from your genetics team.
Set a date to look again
Choose a review point, such as your next birthday or after a family event. Your age, your family and the evidence may all have moved on by then.
Words you will hear
The terms doctors use, in plain language
- Informed choice
- A decision made after hearing the options, the risks and the alternatives. Declining counts as an informed choice when it is made this way.
- Surveillance
- Regular scans or checks to find a cancer early. It does not lower the chance of a cancer starting.
- Risk-reducing option
- Surgery or a medicine that lowers the chance of a cancer starting in the first place.
- Variant of uncertain significance
- A gene change the laboratory cannot yet classify as harmful or harmless. It should not lead to surgery or medicine.
- Cascade testing
- Offering a test for the family's known fault to relatives one step at a time, starting with the closest.
- Symptom awareness
- Knowing which changes in your body to report quickly, rather than waiting for the next appointment.
Side by side
What you keep, and what you give up
You keep
You give up, for now
Your body as it is, with no operation
The larger cut in risk that surgery can bring
Avoiding the side effects of preventive tablets
The smaller cut in risk a medicine can bring
The option to act at any later review
Some benefit for genes where timing matters
Your relatives' chance to be tested
Nothing, if you still share the result with them
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Being straight with you
What this page cannot tell you
It cannot tell you what not acting would mean for your own risk. That depends on your gene, your age, your family history and which options you are declining. For some genes the cost of waiting is small. For a few it is large. What your specific variant means is a question for the counsellor who ordered the test.
It cannot decide for your relatives
Your choice about your own body is yours alone. Your relatives may still carry the same fault and deserve the chance to decide for themselves. Sharing the result does not commit you to acting. In many Telangana families this is the hardest step, especially where marriage prospects are involved, and your counsellor can help you plan how to do it.
Who this does not apply to
If you have cancer now, decisions about treatment are a different conversation with your treating team. If your result was negative for a known family fault, there is usually nothing extra to act on, and this page is not about you.
If you notice a new symptom while you are not in any programme, see a doctor and mention your gene result. Not acting on the result never means ignoring your body.Commonly believed
Four things people tell us, and what is actually true
"If I refuse surgery, the doctors will stop seeing me."
They will not. Declining one option is recorded as your choice, and your surveillance continues. A good service treats your decision with the same care whichever way it goes.
"Whatever is written will happen, so acting makes no difference."
A gene fault raises risk. It does not fix the outcome. Screening finds many cancers early in carriers, when treatment works best. Believing in fate and keeping your checks are not in conflict.
"If I am not acting, there is no point telling my family."
Your relatives may carry the same fault and may choose differently. They cannot decide at all unless they know. Sharing the result is separate from what you do about it.
"Once I have said no, I cannot come back."
You can return at any time. Your result does not expire. Your risk will be updated for your age and the options explained again, without judgement.
Questions we are asked
Common questions about deciding not to act
Will my doctors be annoyed if I decline?
They should not be. Genetic counselling is built on the idea that the person decides. Your team may ask questions to make sure you have the facts, but the decision is yours and it will be respected and recorded as your choice.
Should I still have screening if I do nothing else?
For most genes, yes, if you are willing. Screening does not lower the chance of cancer, but it finds cancers earlier, when treatment works best. If you cannot manage the full schedule, ask which checks matter most for your gene.
Do I have to tell my family if I am not acting?
No one can force you, but it is strongly encouraged. Your relatives may carry the same fault and may want to decide for themselves. Your counsellor can give you a family letter that explains the result without you having to explain it yourself.
Is it risky to wait a few years before deciding?
It depends on the gene and the organ. For some, waiting a few years while in screening changes little. For others, such as ovarian risk with certain genes, guidance gives an age by which surgery is best considered. Ask what waiting means for you.
Does not acting affect my insurance?
Your decision about surgery or medicine is not usually something insurers ask about. The result itself may be, and India has no dedicated law on genetic discrimination. Raise insurance questions with your counsellor, ideally before you arrange new cover.
My family wants me to have surgery. Can I still say no?
Yes. Their worry is real and deserves a kind answer, but the decision about your body is yours. Bringing a relative to a counselling session can help them hear the same facts and understand why screening is a valid choice.
What symptoms should I watch for if I am not in screening?
That depends entirely on your gene, because each gene puts different organs at risk. Ask your counsellor for a short written list for your gene. Any new, persistent change should be seen by a doctor, who should be told about your result.
How do I come back if I change my mind?
Call the CION helpline and say you had a genetic result and want to review your options. Bring your report. You will not have to start from the beginning, and nothing is booked until you are ready.
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
Medical Oncologist
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Sources
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
- NHS — Predictive genetic tests for cancer risk genes
- Cancer Research UK — Inherited cancer genes and increased cancer risk
- National Cancer Institute — Surgery to Reduce the Risk of Breast Cancer
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
Changing your mind later about risk-reducing surgeryHow to reopen the decision whenever you are readySurgery, medication or surveillance: how to weigh themThe three routes laid side by sideThe right not to knowWhen relatives choose not to hear a resultWays to reduce hereditary cancer riskEvery option in one place
Talk to us
Want to talk through your options without being pushed?
Bring your report and your questions. A counsellor can explain what each choice means for your gene and record the decision you make, whatever it is. One helpline serves every CION centre.