Medical Oncologist
CION Cancer Clinics
What you are consenting to: storage, reuse and research | CION Cancer Clinics
Before a genetic test, the consent form asks what may happen to your leftover sample and your data. Storage, reuse for your family and research are usually separate choices. You can say no to research and still have the test. This page explains each part of the form, what saying yes or no changes, and what to ask before you sign. 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
- What happens to my sample and data after the test?
- What exactly are you being asked to agree to?
- What happens to a sample once it reaches the laboratory?
- The storage and research words, in plain language
- What saying yes or no actually changes
- What this page cannot tell you
- Four things people assume about storage and research
- Common questions about storage, reuse and research
The short answer
What happens to my sample and data after the test?
Your sample is tested for the genes named on the form, and then some of it is usually left over. The consent form asks what may happen to that leftover sample and to the data the test produced. Storage, reuse for your family and research are normally separate choices. You can say no to research and still have the test.
Three things are left after a test
The leftover DNA taken from your blood or saliva. The raw data from the machine that read your genes. And the written report with your result. Each one can be kept, reused or shared in a different way, and a good form names each one separately rather than in a single line.
Why the question is asked at all
Keeping a sample can help your family later. A laboratory may need it to check a result, to compare a relative's test, or to look again at a gene when knowledge improves. Research use helps laboratories understand variants that are still unclear. Indian families are poorly represented in the large gene databases, so Indian data is especially useful to that work.
Consent to storage is not consent to anything and everything. It covers what the form says, and nothing more.The boxes on the form
What exactly are you being asked to agree to?
Most forms split the question into four parts. You can answer each one differently.
Storing the leftover sample
The laboratory keeps your DNA after the report is issued. This lets them repeat a check, confirm a result or run an extra test later without taking blood again.
Worth asking
- How long it will be kept
- Whether it is destroyed if you ask
- Where it is physically stored
Reuse for you and your family
If a relative later needs testing, or a new gene is linked to your family's cancer, your stored sample or data can be looked at again. This matters most when the person who had cancer may not be able to give a sample later.
Research use
Your sample or data, with your name removed, may be used to study genes and cancer. Research does not usually send results back to you. Saying no should not change your test, your result or your care in any way.
Sharing the variant with databases
Some laboratories send the variant itself, with no name attached, to public databases. Other laboratories use these to decide whether a variant is harmful. This is how an unclear result gets settled over time.
Not sure whether this applies to you?
Ask an oncologistFrom the lab bench onward
What happens to a sample once it reaches the laboratory?
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DNA is taken out of the sample
Your blood or saliva is processed to pull out the DNA. Only a small part of it is needed for the test itself, which is why some is left over.
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The genes on your form are read
The machine produces raw data covering those genes. Some tests read far more of your DNA than the report will ever mention.
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The report covers only what you agreed
The laboratory reports what your consent covers. If you opted out of findings unrelated to your cancer question, they are not reported.
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Leftover DNA and data are kept, or destroyed
This depends on the boxes you ticked. If you refused storage, the leftover sample should be destroyed once the laboratory's own quality checks are complete.
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Any later use follows your consent
A new test on your stored sample, or a research study, should only happen within what you agreed. A genuinely new use should come back to you first, or pass an ethics committee.
On the consent form
The storage and research words, in plain language
- Storage
- Keeping your leftover DNA or your data after the report has been issued.
- Reanalysis
- Looking again at data already produced, usually when knowledge about a gene improves. It does not always need a new sample.
- De-identified
- Your name and obvious details removed before sharing. It lowers the chance anyone links the data to you. It does not remove that chance entirely.
- Broad consent
- Agreeing to future research that is not yet described, within limits set and checked by an ethics committee.
- Tiered consent
- A form that lets you say yes to some uses and no to others, one box at a time.
- Withdrawal
- Taking back your consent later. It stops future use. It cannot undo research that has already used your de-identified data.
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Side by side
What saying yes or no actually changes
If you agree to storage
If you decline storage
A result can be checked again without new blood
A fresh sample is taken if anything needs checking
Your data can be reviewed as genes are better understood
A later review may need a new test
Relatives keep an option if you are no longer here
Relatives rely on their own tests or an old tissue block
You can still withdraw later
Your test and your care are exactly the same
Being straight with you
What this page cannot tell you
It cannot tell you what your particular laboratory does. Storage periods, research partners and sharing rules differ between laboratories, including laboratories outside India that some clinics send samples to. The form in front of you, and the counsellor who explains it, are the only reliable answer.
It cannot settle the legal question
India's data protection law gives people the right to withdraw consent to the use of their personal data. It does not single out genetic data, and India has no law written specifically for genetic samples or genetic discrimination. If that worries you, raise it before you sign, not afterwards.
Who this does not apply to
This page is about a blood or saliva test for an inherited fault. If your sample was a tumour test to guide treatment, that is a different test with different paperwork, covered on our targeted therapy pages. And if your form has no storage or research section at all, ask whether the laboratory keeps samples.
Ask the clinic for a copy of your signed consent form. You should be given one, and it is the record of what you agreed.Commonly believed
Four things people assume about storage and research
"If I say no to research, they will not test me."
Research is a separate choice. Refusing it should not change your test, your result or your care in any way. If a form makes the test depend on research use, ask why before you sign.
"Once my sample is stored, anyone can test it for anything."
A stored sample can be used only within what you agreed. A genuinely new use should come back to you for consent, or go through an ethics committee first. Storage is not a blank cheque.
"Removing my name makes my data completely anonymous."
It lowers the chance a great deal. It does not bring it to nothing, because DNA is unique to each person and partly shared with relatives. That is why good laboratories also control who can reach research data.
"If I withdraw, everything already done is undone."
Withdrawal stops future use and can mean your sample is destroyed. Research that has already used your de-identified data usually cannot be unpicked. Your own result stays in your medical record.
Questions we are asked
Common questions about storage, reuse and research
Can I have the test but refuse storage and research?
Yes, in almost every case. Storage and research are normally separate boxes on the form, and your test and result do not depend on them. If a laboratory makes research use a condition of testing, you are free to ask your counsellor about a different laboratory.
How long is my DNA kept?
It varies by laboratory and by what you agreed. Some keep leftover DNA only until their own checks are done. Others keep it for many years so it can help with family testing. Ask for the storage period in writing, and ask what happens to the sample at the end of it.
Can my stored sample be used to test my children?
Your children are tested from their own blood or saliva. Your stored sample helps in a different way. If your result ever needs checking, or a new gene is linked to the family's cancer, the laboratory can look at your DNA again. That matters most if you can no longer give a sample.
Will anyone make money from my data?
Some laboratories are private companies, and some research is paid for by industry. A clear consent form says whether your de-identified data may be shared with commercial partners. If it does not say, ask. You can also ask to refuse commercial use while still having the test.
Is my sample sent outside India?
Sometimes. Some clinics use laboratories in other countries, and some Indian laboratories share data with overseas partners. The form or your counsellor should tell you where your sample goes and where your data is held. It is a fair question to ask before you sign.
What happens to my sample if I die?
It stays under the terms you agreed. Many families find a stored sample valuable, because it lets relatives be checked against a confirmed result later. Some forms let you name a relative who may ask for it to be used for family testing. Ask whether yours does.
Can I change my answers after signing?
Yes. You can withdraw consent for storage or research at any time by writing to the clinic or laboratory. Future use stops. Work already done with de-identified data usually cannot be reversed. Keep a copy of your signed form so you know exactly what you are changing.
Will my result be shared with relatives or my employer?
Not without your permission. Agreeing to storage or research should not allow anyone to share your named result with relatives, employers or insurers. Telling relatives is your decision, and your counsellor can help you do it through a family letter.
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 is informed consent?
- Indian Council of Medical Research — National Ethical Guidelines for Biomedical and Health Research Involving Human Participants
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
- NCBI — ClinVar
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 testingThe whole consent conversation, before this one part of itDeciding whether you want secondary findings reportedThe other box on the form people find hardestChanging your mind: withdrawing from testingHow to take back consent once you have signedTesting a deceased relative's stored sampleWhy a stored sample can matter to the family later
Talk to us
Not sure what your consent form is asking?
Bring the form, signed or not, and a counsellor will go through each part with you in Telugu or English. One helpline serves every CION centre.