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CION Cancer Clinics
Secondary findings: deciding whether you want them reported | CION Cancer Clinics
A secondary finding is a result about a gene unrelated to why you were tested, but one a doctor could act on. You decide before the sample is taken whether you want the laboratory to look for them. This page explains what could turn up, what saying yes or no means for you and your family, and the questions worth asking first. At CION Cancer Clinics in Hyderabad, our oncologists review your family history with you and guide you to the right genetic counselling and testing.
NG
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
- What is a secondary finding, and will I be asked about it?
- What kinds of results count as secondary findings?
- What happens between saying yes or no and getting a result?
- The words you will meet, in plain language
- What changes if you say yes, and what changes if you say no
- What this page cannot tell you
- Four things people assume about secondary findings
- Common questions about secondary findings
The short answer
What is a secondary finding, and will I be asked about it?
A secondary finding is a result about a gene that has nothing to do with why you were tested, but that a doctor could act on. You are asked before the sample is taken whether you want the laboratory to look for them. Saying yes or no is your choice, and both answers are reasonable.
Why it only comes up with some tests
Most people tested for an inherited cancer risk have a panel. A panel reads a short list of cancer genes and nothing else, so there is little room for an unrelated surprise. The question matters most with exome or genome sequencing, which reads thousands of genes at once. Those larger tests can pick up a heart or cholesterol risk while looking for a cancer one.
Why the choice is yours
A secondary finding can be genuinely useful. It can also be news you did not ask for, about a condition you had never heard of, which your brothers and children may share. Some people want every answer the test can give. Others want only the answer to the question they came with. Your counsellor will not push you either way.
You make this decision once, before testing. Ask how to change it later if you are unsure.What could turn up
What kinds of results count as secondary findings?
Laboratories do not report everything they see. They look only at an agreed list of genes where knowing early lets doctors do something useful.
Other inherited cancer risks
A fault in a cancer gene that your original question did not cover. This can happen when a test chosen for one cancer also reads genes linked to another.
Inherited heart conditions
Some faults raise the chance of a thickened heart muscle or a dangerous heart rhythm. Knowing early means a heart specialist can watch for signs before symptoms appear.
Very high inherited cholesterol
A single gene fault can keep cholesterol high from childhood. It is treatable with medicine, and relatives can be checked with a simple blood test.
What is left out on purpose
Conditions that nothing can be done about are not on the list. Neither is your carrier status for conditions that affect only children.
- No treatment or prevention exists
- The link to illness is uncertain
- The variant is of uncertain significance
Not sure whether this applies to you?
Ask an oncologistHow the choice is made
What happens between saying yes or no and getting a result?
The counsellor explains the test
At the pre-test session you hear which test is planned and whether it is large enough to produce secondary findings at all. If it is a small cancer panel, the question may not arise.
You mark your choice on the consent form
There is usually a separate box for secondary findings. Take the form home and discuss it with family if you want time.
The laboratory follows your choice
If you opted in, the laboratory checks the agreed list of genes. If you opted out, those genes are not analysed or are not reported.
Any finding is reported separately
A secondary finding appears in its own section of the report, apart from the answer to your main question.
You are referred to the right specialist
A heart or cholesterol finding is handed to a cardiologist or physician. Your counsellor explains what it means for relatives.
On your consent form
The words you will meet, in plain language
- Primary finding
- The answer to the question the test was ordered for, such as whether you carry an inherited breast cancer fault.
- Secondary finding
- A result from a separate, agreed list of genes that the laboratory looks at deliberately, with your permission.
- Incidental finding
- Something noticed by accident while looking for something else. The two terms are often used as if they mean the same.
- Actionable
- A result where doctors can do something useful, such as earlier checks, a medicine or a change in care.
- Opt in, opt out
- Saying yes or no to the laboratory looking for secondary findings in your sample.
- Reanalysis
- Looking again at data already stored from your test. Ask whether your laboratory offers it.
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Side by side
What changes if you say yes, and what changes if you say no
If you opt in
If you opt out
You may learn of a risk you can act on early
You hear only the answer to your main question
Relatives may be offered testing for that finding
No unrelated news reaches the family through you
You may need extra checks with another specialist
No new appointments come from this test
Your report may carry information insurers ask about
Your report stays limited to the original question
Being straight with you
What this page cannot tell you
It cannot make the choice for you. That decision depends on what you want to know, who in your family would be affected, and how you usually cope with uncertain news. A counsellor can talk it through with you in Telugu, in English or with family in the room.
It cannot tell you what your laboratory checks
Laboratories use slightly different gene lists and update them over time. Some report secondary findings only on request. Ask which list your test uses and whether you can change your answer later.
It cannot settle the insurance and marriage question
India has no dedicated law protecting people from genetic discrimination. A finding may raise questions at a marriage discussion or on an insurance form. Raise this with your counsellor before testing. What any finding means for you is a question for the counsellor who ordered the test.
Who this does not apply to
Most people having a small cancer panel will never be asked this question. If your test reads only a handful of cancer genes, there is usually nothing to opt into.
Commonly believed
Four things people assume about secondary findings
"If I opt in, the laboratory will tell me everything in my genes."
It will not. Only an agreed list of genes is checked, and only faults with a clear link to illness are reported. Uncertain results and carrier status are left out.
"No secondary finding means I have no inherited risks at all."
A clear secondary result covers only the genes on the list. It says nothing about conditions outside it, and it does not replace screening for your age.
"Opting out is irresponsible."
It is a legitimate choice, and counsellors respect it. Some people are already carrying a cancer diagnosis and cannot take on more news right now. That is a sound reason.
"A secondary finding means I have that disease."
It means a raised risk. Many people with such a fault stay well for life, especially when checks start early. A specialist will explain what applies to you.
Questions we are asked
Common questions about secondary findings
Do I have to decide about secondary findings today?
No. You can take the consent form home and talk it over with family before the sample is taken. The decision only needs to be made before the laboratory starts work. If you are unsure, ask your counsellor what happens if you leave the box blank.
Can I change my mind after the test?
Often yes, if the laboratory still holds your data and is willing to reanalyse it. Some laboratories charge for this. Changing from yes to no after a finding has been reported is harder, because the information is already in your record.
Will a secondary finding change my cancer treatment?
Usually not. A heart or cholesterol finding is managed separately by the right specialist. A second cancer gene fault may matter to your oncologist, and they will explain whether it changes anything in your plan.
Does a small cancer gene panel give secondary findings?
Rarely. A panel only reads the cancer genes it was designed for, so there is little room for an unrelated result. The question is mainly asked before exome or genome sequencing, which read far more of your genes.
Should my children's secondary findings be reported?
Specialists differ on this, and practice varies between countries. Some findings help a child only if checks start young. Others matter only in adult life. Discuss it carefully with the counsellor before a child's sample is sent.
Will my relatives be told about a secondary finding?
Not without you. The result is yours, and you decide who to share it with. Your counsellor can write a family letter that explains the finding in plain words, so relatives can take it to their own doctor.
Does opting in cost extra?
It depends on the laboratory. Some include the agreed list in the price of a large test. Others charge separately, and follow-up checks with another specialist add their own cost. Ask for the full price in writing before you sign.
Who explains a secondary finding if one is reported?
The counsellor who ordered the test, and then a specialist for that condition. Do not search the gene name online and draw conclusions. If you are not sure who to approach, call the CION helpline and someone will guide you.
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
- MedlinePlus Genetics — What are secondary findings from genetic testing?
- MedlinePlus Genetics — What is informed consent?
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
- 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
Informed consent for genetic testingEverything else on the form you are being asked to signWhat you are consenting to: storage, reuse and researchWhat happens to your sample and data after the testChoosing which test to haveWhether your test is large enough for this question to arisePre-test counselling: what is coveredThe session where this choice is explained
Talk to us
Unsure whether to tick yes or no?
A genetic counsellor can talk the choice through with you and your family before any sample is taken, in Telugu or English. One helpline serves every CION centre.