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CION Cancer Clinics
Keeping a family genetic record for the next generation | CION Cancer Clinics
A family genetic record lets your children and grandchildren test for the exact fault found in your family, without starting again. It needs only a few papers: the full report, the family letter, a simple family tree and old pathology details. This page explains what to keep, how to store it so it survives, and when to pass it on. 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
- Why should a family keep a genetic record at all?
- What should go into a family genetic record?
- How do you keep a record that lasts?
- The words worth copying exactly
- What makes a record useful, and what does not?
- What this page cannot tell you
- Four things families say about keeping records
- Common questions about a family genetic record
The short answer
Why should a family keep a genetic record at all?
Because the people who need it most are often not born yet, or are children today. A gene fault found in a parent matters to a grandchild decades later, and by then the report, the laboratory and the counsellor may be hard to trace. A simple, well-kept family record lets the next generation test for the exact fault without starting again from nothing.
What goes missing without one
Families lose the original report in a house move. The person who was tested dies, and nobody knows which laboratory did the work. A child grows up hearing that "there was something about a gene" but not which gene, or which exact change. Their doctor then has to repeat a broad test when a targeted, cheaper one would have done.
What a good record does
It turns a vague family story into something a doctor can act on. It names the gene and the exact variant, says who carries it and who does not, and points to the report that proves it. It also records who had cancer, of what kind, and at roughly what age, which counsellors use even when no fault was found.
A record is not a diagnosis for anyone in it. It is information a future doctor can use.What to keep
What should go into a family genetic record?
Four kinds of paper matter. Everything else is useful but optional.
The original test report
The full report, not a summary or a photograph of one page. It carries the gene name, the exact variant, the laboratory and the date, which is what a future laboratory needs to test a relative.
The family letter
The letter the counsellor wrote for relatives. It explains the finding in plain words and tells a relative's doctor what to test for.
The family tree
A drawing of who is related to whom, with each cancer and the rough age at diagnosis written beside the person.
Worth noting beside each name
- The type of cancer, if any
- Roughly how old they were when diagnosed
- Whether they were tested, and the result
- Which side of the family they are on
Old pathology details
For relatives who had cancer, the hospital name and pathology number from their biopsy or surgery report. These help trace a tissue block if it is ever needed.
Not sure whether this applies to you?
Ask an oncologistStep by step
How do you keep a record that lasts?
Gather the papers in one place
Collect every report, letter and pathology slip into a single folder. Ask the laboratory for a fresh copy of any report that is missing.
Keep a paper copy and a digital copy
Scan or photograph every page clearly. Store the digital copy in more than one place, such as an email account and a health records app, so a lost phone does not mean a lost record.
Tell at least two relatives where it is
A record that only one person can find dies with that person. Choose a sibling or adult child on each side of the family who knows where the folder lives.
Update it when something changes
Add a new diagnosis, a relative's result or a reclassification letter as soon as it arrives. Note the date on each addition.
Hand it on at the right time
For most adult-onset faults, children receive the details when they are adults and can decide about testing themselves.
On the paperwork
The words worth copying exactly
- Gene name
- The short capital-letter name, such as BRCA1 or MLH1. Write it exactly as the report prints it.
- Variant
- The exact spelling change in the gene. It looks like a string of letters and numbers, and a laboratory needs every character of it.
- Classification
- Whether the laboratory called the variant pathogenic, meaning it breaks the gene, or uncertain. This decides whether relatives are tested.
- Pedigree
- The formal name for the family tree a counsellor draws. Keep a copy if you were given one.
- Reclassification
- A later change in how a laboratory classifies a variant as evidence grows. It can change advice for the whole family.
- Index case
- The first person in the family found to carry the fault. Relatives' tests are usually matched to this person's report.
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Side by side
What makes a record useful, and what does not?
Useful to a future doctor
Not enough on its own
The full report with the exact variant
"Grandmother had a breast cancer gene"
The laboratory name and report date
A photo of the first page only
Who tested negative, as well as positive
A list of carriers only
Cancer type and rough age for each relative
"Many people on father's side had cancer"
Being straight with you
What this page cannot tell you
It cannot tell you what a report in your family folder means. The same gene name can carry very different risks depending on the exact variant. What your specific variant means is a question for the counsellor who ordered the test, or for a counsellor your relative sees later.
It cannot decide who should see the record
Genetic information is private, and relatives feel differently about it. Some want everyone told. Others want nothing written down. India has no dedicated law on genetic discrimination, so a counsellor can help you think through who holds the record and what goes into it.
Who this does not apply to
If testing in your family found no fault and the family history is not striking, a detailed genetic record is less important. A short note of who had cancer, and at what age, is still worth keeping. Your counsellor will tell you whether anything more is needed.
If a relative's record is lost, the laboratory that did the test can often reissue the report to the person tested or their next of kin.Commonly believed
Four things families say about keeping records
"The hospital will always have it on file."
Hospitals and laboratories do not keep records forever, and some change owners or close. The family's own copy is often the only one that can be found when it is needed.
"We all know the gene. We do not need the paper."
Knowing the gene is not enough. A laboratory needs the exact variant to run a targeted test on a relative. Without it, the relative usually needs a broader and more expensive test.
"Once tested, the result never changes."
The test does not change, but the understanding of a variant can. A result can be reclassified as evidence grows, which is why the record should hold the laboratory's contact details.
"Writing it down will harm the children's marriage prospects."
A record kept privately within the family harms no one. Losing it can harm the children, who may then miss testing or screening that would have helped them.
Questions we are asked
Common questions about a family genetic record
What is the single most important thing to keep?
The full original report of the first person in the family found to carry the fault. It names the gene and the exact variant. Every later test in the family is matched to it, so losing it can mean starting again with a broad test.
Is a photo on my phone enough?
It is a good start, but phones get lost and replaced. Keep the paper report, and save clear scans of every page in at least two other places. Tell a sibling or adult child where the copies are kept.
Should negative results go into the record too?
Yes. Knowing that a relative tested negative for the family fault tells their children they do not need testing for it. Without that note, a future doctor may test people who have no risk from that line of the family.
When should I tell my children about the record?
For most faults that raise risk only in adult life, the usual advice is to share the details when a child becomes an adult. A few syndromes need childhood testing, and your counsellor will tell you if yours is one of them.
Can I store it in a government health records app?
You can upload reports to a health records app linked to your ABHA number under the Ayushman Bharat Digital Mission. Keep a paper copy as well. Think about who has access to any account before uploading genetic information.
What if the laboratory that tested us has closed?
Ask the doctor or counsellor who ordered the test, who may hold a copy. If nobody does, a new laboratory can often retest a living carrier to confirm the exact variant before other relatives are tested.
How do I find out if our variant is reclassified?
Some laboratories write to the ordering doctor when a classification changes, but many do not. Keep the laboratory's contact details in the record and ask your counsellor how often the family should check.
Does the record need to be in English?
The report itself will be in English, and it should stay as it is. You can add a note in Telugu explaining what it means for each branch of the family, so older relatives understand why the folder matters.
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 — Why is it important to know my family health history?
- NHS — Predictive genetic tests for cancer risk genes
- National Health Authority — Ayushman Bharat Digital Mission
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.
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