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Research consent for your sample: what you are agreeing to | CION Cancer Clinics
You can say yes to your genetic test and no to research. The two are separate choices, and refusing research does not change your care in any way. This page explains what a research consent form usually asks, what broad consent means, how your sample and data are protected in India, and how to change your mind later if you want to. 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
- Do I have to let my sample be used for research?
- What kinds of research consent might I be offered?
- What actually happens to a sample given for research?
- The words you will meet on a research consent form
- What changes if I say yes, and what does not
- Four things people assume about research consent
- What this page cannot tell you
- Common questions about research consent
The short answer
Do I have to let my sample be used for research?
No. Agreeing to a genetic test and agreeing to research are two separate decisions, and you can say yes to one and no to the other. Saying no to research does not change your test, your result or your treatment in any way.
Why you are asked at all
After a test, part of your blood sample and the data read from it are usually left over. Research on leftover samples is how laboratories learn which gene changes matter and which are harmless. Much of what is known about inherited cancer came from families who said yes. Genetic data from Indian families is still thin, which is one reason researchers here ask.
What the question usually looks like
It may be a separate form, a separate page, or a row of tick boxes at the end of the test consent. Treat it as its own decision. If it is folded into the main form without a clear choice, ask the counsellor to explain it and to record your answer separately before you sign.
Your care does not depend on your answer. That is a basic rule of research ethics, not a favour.The choices on the form
What kinds of research consent might I be offered?
Forms differ between laboratories, but most choices fall into one of four types.
Consent for one study
Your sample is used only for a named project with a stated question. When that project ends, the sample is not used for anything else without asking you again.
Worth knowing
- The clearest to understand
- The most limited for researchers
Broad consent
You agree to future research that is not yet planned, within limits an ethics committee approves. India's national research guidelines from ICMR allow this for stored samples, provided you are told the limits and can withdraw.
Broad does not mean unlimited. Each new study still needs ethics approval.Tiered consent
A set of separate tick boxes. You might agree to cancer research but not to other diseases, to Indian researchers but not overseas partners, or to being contacted again but not to commercial use.
No research at all
Your leftover sample is stored or destroyed under the laboratory's normal rules, and your data is used only for your own report. Nothing about your care changes, and nobody needs to know why you declined.
Not sure whether this applies to you?
Ask an oncologistAfter you say yes
What actually happens to a sample given for research?
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Your name is taken off
The sample and data are given a code. The key that links the code to your name is kept separately by a small number of people, so researchers work with the code rather than with you.
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An ethics committee approves each use
Before a study can use stored samples, a research ethics committee checks that the question is sound, the risks are small and the use fits what donors agreed to.
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The sample is read or stored
Some studies read part of your genetic code. Others keep the sample frozen for later work. Either way, access is limited to approved researchers.
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Results are pooled, not personal
Research findings come from many people analysed together. Most studies do not send individual results back, and those that might must say so on the form.
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You can still withdraw
You can ask for your sample to be taken out of future use. Data already analysed or published cannot be pulled back, and a good form tells you this plainly.
On the form
The words you will meet on a research consent form
- Informed consent
- Agreement given after the purpose, risks and your choices have been explained in a language you understand. Signing a form you have not understood is not informed consent.
- De-identified
- Your name and obvious details have been removed and replaced with a code. This lowers the chance of the data being linked to you, but does not remove it.
- Biobank
- A managed store of samples and linked health data kept for future research, under written rules about who may use it.
- Ethics committee
- An independent panel that must approve research on people before it starts. Indian guidelines require one for research on human samples.
- Recontact
- Permission for researchers to get in touch again, perhaps to invite you into a new study or, rarely, to share a finding.
- Withdrawal
- Taking back your consent for future use. It stops new work on your sample. It cannot undo work already done.
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Side by side
What changes if I say yes, and what does not
If you agree
If you decline
Your test and result are exactly the same
Your test and result are exactly the same
Leftover sample may be coded and stored for future studies
Leftover sample follows the lab's normal rules
Coded data may be shared with approved researchers
Your data is used only for your own report
You may be contacted again, if you ticked that box
Nobody contacts you about research
You can withdraw later from future use
You can usually agree later, if the sample still exists
Commonly believed
Four things people assume about research consent
"If I refuse research, the hospital will treat me differently."
Refusing carries no penalty. Your test, your report and your treatment go ahead exactly as planned, and the team treating you has no reason to ask what you chose.
"Once my name is removed, nobody could ever trace the data to me."
Genetic data is unusual. It is unique to you and partly shared with your relatives. Coding lowers the chance of anyone linking it back to you a great deal, but it does not bring that chance to zero, which is why access is also controlled.
"Research means my sample will be sold to a company."
Some research involves commercial partners and much of it does not. A good form tells you whether commercial use is possible and lets you say no to that part alone.
"Once I sign, I can never take it back."
You can withdraw from future use at any time. What cannot be undone is analysis already finished or findings already published, because by then your data is part of a larger pooled result.
Being straight with you
What this page cannot tell you
It cannot tell you what a particular form in front of you allows. Forms differ between laboratories and between studies, and the exact wording matters. Ask the counsellor or the research coordinator to walk you through it, in Telugu if that is easier, and take the form home if you need time to think.
It cannot tell you whether a study is worth joining
That depends on the question it asks and who runs it. Ask who approved the study, who will see your data, whether any of it goes abroad and how to withdraw. A well-run study answers all four readily.
Who this does not apply to
If you are having a routine test with no research form attached, none of this applies to you. A clinical genetic test on its own does not put your sample into research. Tumour testing to choose a treatment is a separate matter, covered under targeted therapy.
What your specific result means is a question for the counsellor who ordered the test, not for a research team.Questions we are asked
Common questions about research consent
Will saying no to research affect my treatment?
No. Research is voluntary, and refusing it has no effect on your test, your result, your treatment or how staff treat you. If anyone suggests otherwise, raise it with the doctor in charge of your care or with the hospital's ethics committee.
Can I agree to research but not to commercial use?
Often, if the form offers tiered choices. If it does not, ask whether a commercial partner could ever use your sample or data. You can decline the whole research request if you are not comfortable with the answer you are given.
Which rules protect my sample in India?
Research on human samples is governed by ICMR's national ethical guidelines, which require informed consent and ethics committee approval. The Digital Personal Data Protection Act 2023 largely steps back for research that is not used to make decisions about you, so the consent form and the ethics committee do most of the protecting.
Will I get results back from the research?
Usually not. Research findings come from pooled data and are rarely checked to the standard needed for a clinical report. Some studies offer to contact you if they find something important for your health. The form should say plainly whether that is possible.
Can my sample be sent abroad for research?
Only with the right approvals, and the form should say so. Indian guidelines expect extra clearances and written agreements when samples go to overseas partners. If you do not want your sample to leave India, tick that option if it exists, or decline.
How do I withdraw my consent later?
Write to the laboratory or research team named on your form, quoting your sample or study number. Ask them to confirm in writing that your sample will not be used again and whether it will be destroyed. Keep a copy of the form so you know who to contact.
Does my family have a say?
The decision is yours. But your genetic data carries partial information about your parents, brothers, sisters and children, so some families like to talk it over first. That conversation is sensible, not required, and nobody else can sign for an adult who can decide for themselves.
What if I signed without understanding the form?
Ask for it to be explained again. You can withdraw from future research use at any point, so a rushed signature is not final. Next time, ask for the research part to be discussed separately from the test, and give yourself time before signing.
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)
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Sources
- Indian Council of Medical Research — National Ethical Guidelines for Biomedical and Health Research Involving Human Participants, 2017
- MedlinePlus Genetics — What is informed consent?
- Ministry of Electronics and Information Technology — The Digital Personal Data Protection Act, 2023 (No. 22 of 2023)
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
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
Sample storage, destruction and withdrawalWhat happens to a sample once testing is doneSending samples abroad: the rulesWhen a sample may leave India, and who must approve itYour genetic data under the DPDP Act 2023Your rights over the data read from your sampleWho can see your genetic result?Everyone who may handle your report, and who may not
Talk to us
Not sure what a consent form is asking you to agree to?
Bring the form to a counsellor and we will go through it with you, in Telugu if you prefer, before you sign anything. One helpline serves every CION centre.