Medical Oncologist
CION Cancer Clinics
Secondary and incidental findings: results you were not looking for | CION Cancer Clinics
A broader genetic test can occasionally turn up something that has nothing to do with the cancer you were tested for. A secondary finding is one the laboratory deliberately looks for; an incidental finding turns up by chance. This page explains the difference and what happens if either one appears on your report. At CION Cancer Clinics in Hyderabad, our oncologists review your family history with you and guide you to the right genetic counselling and testing.
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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
The short answer
What is a secondary or incidental finding on a genetic report?
Both are results that have nothing to do with the cancer you were tested for. A secondary finding is one the laboratory deliberately looked for, on a short list of genes linked to serious but treatable conditions. An incidental finding turns up by accident, in a gene nobody was looking at, simply because a broad panel happened to include it.
Why broader tests carry this risk at all
Older, narrow panels tested only genes tied to the cancer in question, so they had almost nothing extra to find. Wider panels, and especially whole exome testing, read far more of your genetic instructions at once. Reading more inevitably means occasionally seeing something unrelated to the original question.
Who decides whether you are told
Reputable laboratories only report secondary findings from a recognised list, and only for conditions where knowing actually helps — a heart rhythm problem that can be treated, for instance, or a cholesterol condition that runs in families. You are usually asked in advance whether you want to know about these at all, separately from the cancer result itself. The list itself is short and deliberately conservative. It leaves out conditions where nothing useful could be done even if a fault were found, because reporting those would only add worry without adding a way forward.
You can decline to receive secondary findings before the test is even sent, and most patients are asked this directly.What turns up
The kinds of secondary findings a broader panel can return
These are examples of categories, not a promise that any of them will apply to you. Most people tested never receive one.
Heart rhythm and heart muscle conditions
Some inherited conditions affect the heart's electrical system or the muscle itself, often with no symptoms until something goes wrong suddenly. These are on secondary finding lists precisely because knowing in advance lets a cardiologist act before that happens.
Familial cholesterol conditions
A fault that raises cholesterol from birth, independent of diet, can run quietly through a family for generations before someone is diagnosed with heart disease early. Finding it on a cancer panel gives the family a head start they would not otherwise have had.
Other cancer risks outside the one you were tested for
A panel built around one cancer type can still include genes linked to a completely different cancer. Occasionally that gene comes back positive even though it has nothing to do with why you were referred.
Usually leads to
- A referral to a relevant specialist
- A separate screening plan for that condition
Carrier status for an unrelated inherited condition
You can carry a single copy of a fault linked to a condition that only causes problems if a child inherits two copies, one from each parent. This matters most for family planning and is usually raised only when it is relevant to that decision.
Not sure whether this applies to you?
Ask an oncologistIf one comes back
What happens after a secondary finding is reported
The laboratory flags it separately
Secondary findings are reported apart from the main cancer result, clearly labelled, so nobody mistakes one for the other on the page.
Your counsellor contacts you
This is not left for you to read alone. A genetic counsellor arranges a conversation to explain what the finding is and why it was reported to you at all.
You are referred to the right specialist
A cardiac finding goes to a cardiologist, a cholesterol finding to the relevant physician. Your oncologist stays focused on the cancer; someone else takes on the new finding.
Relatives are discussed, gently
Because these conditions are inherited too, your counsellor will talk through whether close relatives might want to know and be tested for the same specific fault.
On your report
The words you will meet, in plain language
- Secondary finding
- A result deliberately looked for, on a fixed list of genes, because finding it early genuinely changes what can be done for you.
- Incidental finding
- A result nobody was looking for, turned up by chance because a wide test happened to cover that gene.
- Opt-out
- Your choice, made before testing, not to be told about secondary findings even if the laboratory finds one.
- Actionable
- A finding is called actionable when there is something genuinely useful to do about it, such as extra monitoring or a specific treatment.
- Exome
- The part of your genetic material that carries the instructions for making proteins. An exome test reads far more of it than a targeted cancer panel does.
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Did you know
Professional bodies publish an agreed list of genes that laboratories may report as secondary findings. The list is reviewed and updated over time, so a test done a few years ago may not have screened for the same set of conditions a newer one does.
Being straight with you
What this page cannot tell you
It cannot tell you whether your own test is even capable of returning a secondary finding. Narrow panels built around one cancer type usually cannot, because they simply do not read the genes involved. Only broader panels and exome testing carry this possibility, and your consent form should say clearly whether yours was one of them.
Who this does not apply to
If you were tested on a small, targeted panel for one specific inherited cancer, secondary findings are very unlikely to be part of your result at all. This page mainly concerns people who had, or are considering, a wider test.
What it cannot do for a finding you already have
If your report already lists a secondary finding, this page cannot interpret it for you. What a specific gene means for your heart, your cholesterol or anything else is a question for the specialist your counsellor refers you to, not something to work out from a general explanation online. It also cannot tell you how urgently to act. Some secondary findings call for a prompt referral, others for a routine one at your own pace, and that judgement depends on the exact condition named on your report.
If your consent form is unclear about whether you opted in to secondary findings, ask your counsellor to check before results come back.Questions we are asked
Common questions about secondary and incidental findings
Will my cancer genetic test definitely check for these?
Not necessarily. Only broader panels and exome testing are capable of returning secondary findings. A narrow panel built around one specific cancer usually does not read the genes involved, so there is nothing extra for it to find.
Can I refuse to be told about secondary findings?
Yes. You are normally asked before testing whether you want secondary findings reported to you at all. Declining does not affect the main cancer result, which is reported either way.
Is an incidental finding a mistake by the laboratory?
No. It is an expected, if uncommon, consequence of reading more of your genetic material than the original question needed. The laboratory has done nothing wrong by finding it.
Does a secondary finding mean I have that condition now?
No. It means you carry a fault linked to a raised risk of that condition, not that you have it. A specialist will assess you properly before anything is treated or assumed.
Should my relatives be tested for a secondary finding too?
Often worth discussing, because these conditions are inherited in the same way cancer genes are. Your counsellor will talk through who in the family might benefit from knowing and being tested for the exact same fault.
Who explains a secondary finding to me?
Your genetic counsellor first, and then the specialist relevant to the finding itself. Your oncologist is told but generally stays focused on your cancer care.
Can I change my mind about opting in later?
Ask your counsellor. Some laboratories allow a later request to check stored results against the secondary findings list, though this varies from one laboratory to the next and is not always possible.
Where do I start if my report already has one?
Call the CION helpline and mention that your report includes a secondary or incidental finding. Someone will make sure you are connected to a genetic counsellor and the right specialist without delay.
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
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
- MedlinePlus Genetics — What are secondary findings from genetic testing?
- NHS — Predictive genetic tests for cancer risk genes
- GeneReviews (NCBI) — Genetic Counseling: Principles and Practice
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
How to read a germline genetic test reportStart here if the report layout itself is unfamiliarFinding a non-cancer condition in your resultsWhat happens next when the finding is a named conditionWhat a good genetic report should containHow secondary findings should be labelled on a proper reportGetting your raw genetic dataFor families who want the full underlying data, not just the summary
Talk to us
Found a secondary finding on your report?
Tell us what your report says and we will connect you to a genetic counsellor and the right specialist. One helpline serves every CION centre.