Medical Oncologist
CION Cancer Clinics
Getting the raw data behind your genetic report | CION Cancer Clinics
Raw genetic data is the set of files the laboratory's machines produced before anyone wrote your report. You can usually ask for it, though each laboratory sets its own process and fees. For most families the report matters far more than the files behind it. This page explains what the files are, when they genuinely help, how to request them, and why uploading them to a free website carries real risk. 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
17+specialists on panel
15,000+patients treated
35+centres across Telangana & AP
4.8★ / 800+Google rating
On this page
- Can I get the raw data behind my genetic report?
- When is it worth asking for your raw files?
- How do you actually ask a laboratory for your raw data?
- The file names you will see, in plain language
- Your report and your raw data: what each one gives you
- What this page cannot tell you
- Four things people assume about raw genetic data
- Common questions about getting your raw genetic data
The short answer
Can I get the raw data behind my genetic report?
Usually, yes, if you ask the laboratory in writing and follow its process. Raw data is the set of computer files the sequencing machine produced before a scientist reviewed it and wrote your report. It is not a second, more detailed report. It is unchecked material that needs expert software and training to read.
Why anyone asks for it
The most common reason is a future second look. Laboratories learn more about genes every year, and a file that shows nothing worrying today can be reanalysed later. Some families want a copy in case the laboratory closes, merges or stops keeping old records. Others are asked for it by a doctor who wants a different laboratory to reinterpret the result.
Why most people never need it
Your report already holds the findings that a qualified scientist checked and stood behind. The raw files add thousands of unfiltered readings, most of them normal human differences and some of them simple machine errors. Without the right tools, they are more likely to confuse than to help.
Your report is the result. Raw data is the working behind it.When it earns its place
When is it worth asking for your raw files?
There are a few situations where holding your own copy genuinely helps. Outside them, the report is enough.
A doctor wants it reanalysed
A genetic counsellor may want a different laboratory to take a fresh look, especially when the family history strongly suggests an inherited cause but the report found nothing.
Usually needs
- The variant file at the very least
- Often the aligned read file as well
The laboratory may not keep it
Laboratories keep data for a set period that differs from one to the next. If yours is small, overseas or has changed hands, a personal copy protects against the files simply disappearing.
A research study asks for it
Some studies accept existing data rather than a new sample. Read the consent form carefully, and ask who else will see the files and for how long.
When it does not help
If you hoped to find answers the report did not give, raw data rarely delivers them on its own. A panel test only read the genes on that panel, so the files hold nothing about the rest.
Raw data from a panel cannot be turned into a whole genome later.Not sure whether this applies to you?
Ask an oncologistMaking the request
How do you actually ask a laboratory for your raw data?
-
Start with the doctor or counsellor who ordered it
They know which laboratory ran the test and often have a contact there. They can also tell you whether raw data will help with what you are trying to do, before you spend time on it.
-
Write to the laboratory
Give your full name, date of birth, the sample or report number and the date of the report. Include a copy of your identity document. Many laboratories have a form for this.
-
Say exactly which files you want
Ask for the variant file and the aligned read file, and name the reference genome version they used. If a second laboratory has asked for specific files, copy its request word for word.
-
Ask about fees, timing and delivery
Some laboratories charge for preparing large files. Delivery is usually through a secure download link, and larger files may need a hard drive sent by courier.
-
Store it as carefully as a medical record
Keep one copy offline and one in a safe place, and write down what each file is. Share it only with a named professional or laboratory, never through a public website.
In the download folder
The file names you will see, in plain language
- FASTQ
- The rawest form. Millions of short pieces of DNA sequence straight from the machine, not yet placed in order.
- BAM or CRAM
- The same pieces, lined up against a standard human reference. This is what a second laboratory needs for a proper reanalysis.
- VCF
- A list of the places where your DNA differs from the reference. It is small, but it includes differences the report left out on purpose.
- Reference genome
- The standard human sequence your data was compared against. The version name matters to any laboratory that reads the files later.
- Coverage
- How many times each part of a gene was read. Low coverage means that part was not reliably checked.
- Panel
- A test that reads a chosen set of genes only. Its raw files say nothing about genes outside that set.
Leave a number, we will call you
One field. No form to fill in, and no charge for the call.
Side by side
Your report and your raw data: what each one gives you
Your report
Your raw data
Checked and signed by a qualified scientist
Unchecked, including machine errors
Lists only findings that matter medically
Lists thousands of normal differences too
Readable by any doctor
Needs specialist software to open
Safe to use for medical decisions
Never safe to act on without confirmation
Being straight with you
What this page cannot tell you
It cannot tell you what your raw files contain, and neither can a free website that promises to. What your specific variant means is a question for the counsellor who ordered the test, working from a confirmed result rather than an unchecked file.
It cannot tell you your legal rights in every case
India's data protection law gives people rights over personal data held about them, but its rules are new. How they apply to raw sequencing files has not been tested. In practice, each laboratory's own policy decides what you receive and at what cost.
Who this does not apply to
Most people with a clear report do not need their raw data at all. If your test was on a tumour sample to guide treatment, that is a different kind of test, covered on our targeted therapy pages. Raw files from an ancestry or wellness kit are also a different thing, and are not a medical test.
Your raw data describes your relatives too. Think about that before sharing it anywhere.Commonly believed
Four things people assume about raw genetic data
"The raw data will show what the report was hiding."
Laboratories leave out findings because they are harmless, unconfirmed or outside what you consented to, not to keep secrets. Anything with a clear medical meaning in the tested genes belongs on the report.
"A free website can read my file and give me the answer."
These tools often flag harmless differences or machine errors as dangerous. Families have been badly frightened by alarms that a proper laboratory check later showed were false.
"My ancestry kit data is just as good as a clinical test."
Most ancestry kits read a scattered sample of known positions, not whole genes. They can miss a harmful fault entirely, and their raw calls can be wrong. Any finding needs a clinical test to confirm it.
"Once I have a copy, it is private forever."
Every upload creates another copy you no longer control. DNA cannot be changed like a password, and it also reveals things about your parents, siblings and children.
Questions we are asked
Common questions about getting your raw genetic data
Is the laboratory obliged to give me my raw data?
Most laboratories will provide it on a written request, but India has no specific rule that sets out exactly which files you must receive. Ask for the laboratory's written policy. If it refuses, your ordering doctor can often request the files on your behalf for a reanalysis.
Will it cost extra?
Sometimes. Preparing and transferring large files takes staff time and storage, and some laboratories charge for it. Others include it free. Ask before you submit the request so there is no surprise, and ask whether the charge differs by file type.
Which file should I ask for?
If another laboratory is going to reanalyse your result, ask it which files it needs and request exactly those. Most want the aligned read file along with the variant file. If you are only keeping a copy for the future, asking for both is the safest choice.
Can I open the files on my phone or laptop?
The variant file can be opened as text, but it will look like rows of codes and numbers. The larger files need specialist software and a powerful computer. Opening them yourself will not tell you anything you can safely act on.
Should I upload my data to a website that interprets it?
We advise against it. These sites vary widely in accuracy, often produce false alarms, and may keep or share your data in ways that are hard to check. If you want a second opinion, ask a genetic counsellor to arrange a reanalysis through a clinical laboratory.
Can a reanalysis of old data find something new?
Sometimes. As more is learned about genes, a difference once thought harmless may be reclassified, or a gene may be added to the analysis. Reanalysis does not find anything in genes the original test never read, so the value depends on what was tested first.
My relative has died. Can the family get their data?
It may be possible, but laboratories are careful about releasing a dead person's data. Expect to show proof of your relationship and the reason for the request. A genetic counsellor can often make this request more easily than a family member alone.
How should I store the files safely?
Keep one copy on an external drive at home and one in a secure personal account, with a note describing each file and the laboratory that made it. Do not keep them in a shared family folder. Treat them with the same care as bank documents.
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
Want a specific doctor for your case? Mention them when booking.
Book Free ConsultationBook an appointment with our specialist
Share your name and number — we'll call you back within 30 minutes to schedule your consultation.
Sources
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
- MedlinePlus Genetics — What do the results of genetic tests mean?
- MedlinePlus Genetics — What is direct-to-consumer genetic testing?
- 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
Having a report reinterpreted elsewhereThe usual reason anyone needs the raw filesClinVar and looking up your own variantWhat a public database can and cannot tell youKeeping your report findable for yearsStoring the report and files so they surviveShould you search for your variant online?The risks of reading results without a counsellor
Talk to us
Wondering whether your old result is worth a second look?
Tell us when and where you were tested, and we will explain whether a reanalysis is likely to help and which files it would need. One helpline serves every CION centre.