Medical Oncologist
Genetic predisposition & family risk
Genetic Counselling: — What Actually Happens in the Session
Most people arrive not knowing what to expect. A genetic counselling session is a structured conversation about your family history and your personal cancer risk — not a procedure, not a verdict, and not something you need to prepare for beyond bringing what your family knows.
Medically reviewed by Dr. Bharati Devi Gorantla, Medical Oncologist, MBBS · MD · DM (Adyar, Chennai) · ECMO · MRCP SCE (UK) · Last reviewed August 2026
- A conversation, not a procedure — No examination, no immediate test result. The counsellor asks questions and you get answers.
- Risk given as a real number — You learn your estimated lifetime risk as an absolute figure, not just 'elevated' or 'normal'.
- Testing is your choice — Genetic testing requires your explicit consent. You can attend counselling and decide not to test.
- You will not face the result alone — A follow-up session explains any result in full and sets out a concrete screening or prevention plan.
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A genetic counselling session is a structured conversation, usually lasting one to two hours. A trained counsellor maps your family history, calculates your personal lifetime cancer risk using validated models, and explains what genetic testing can tell you. You leave with a written summary and a clear plan for what comes next.
What do you actually do in a genetic counselling session?
A genetic counsellor is a specialist trained to read family histories, interpret risk models, and translate complex information into plain language. The session involves no physical examination and no immediate test results.
The counsellor builds a three-generation pedigree — a family tree that maps who has had cancer, at what age, and what type. This pattern, not a single diagnosis, is what reveals whether an inherited risk is likely.
You are not expected to arrive with the correct terminology or a complete family history. The counsellor guides the conversation and will tell you when a gap in your family history matters and when it does not.
How does a genetic counselling session work, step by step?
Family history review
The counsellor maps three generations of your family, noting cancer types and ages at diagnosis. Bring what you know — an incomplete history is still useful.
Personal risk calculation
Your lifetime cancer risk is estimated using validated models and expressed as an absolute figure. The counsellor explains what the number means in practice, not just whether it is above average.
Discussion of genetic testing
If your history suggests an inherited variant is likely, the counsellor explains which gene panel is relevant, what a result can and cannot tell you, and what happens if a variant is found.
Informed consent
If you decide to proceed with testing, you sign a consent form. Testing is never done without your explicit agreement, and you can take time before deciding.
Sample collection
A blood or saliva sample is taken, usually the same day. Most panels return results within two to four weeks.
Results appointment
A separate session goes through the results, what they mean for your cancer risk, and the surveillance or prevention plan that follows. Results are not given by phone.
What do the risk numbers mean, and what screening schedule follows?
If a pathogenic variant is found, your counsellor replaces general population estimates with your personal lifetime risk. NCCN guidelines report lifetime breast cancer risk in the range of 46 to 87 percent for BRCA1 carriers and 38 to 84 percent for BRCA2 carriers. The general population lifetime breast cancer risk is in the range of 12 to 13 percent. For Lynch syndrome, NCCN places lifetime colorectal cancer risk in the range of 10 to 82 percent across the affected genes.
These absolute figures matter because they drive different decisions than a vague 'elevated risk' would. One person with a given figure may choose enhanced surveillance; another may ask about preventive surgery. Your counsellor explains both options without directing you either way.
Surveillance for confirmed high-risk variants starts before symptoms appear. NCCN recommends annual breast MRI and mammography for BRCA carriers beginning between age 25 and 30. For Lynch syndrome carriers, NCCN recommends colonoscopy every one to two years from age 20 to 25. Your specific schedule depends on your variant, your family history, and your age at the time of assessment.
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MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
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MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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What should you bring to your genetic counselling appointment?
- Names of relatives who have had cancer — type of cancer and age at diagnosis if you know it
- Whether any close relatives have already had genetic testing, and the result if known
- Your own cancer history if relevant, including any previous pathology reports
- Any prior genetic test reports from your own or a relative's treatment
- A written list of questions — they are easy to forget during the session itself
- A support person if you would like one — it helps to have someone listen while you absorb new information
Concerns people most often bring to the session
Will knowing my risk make things worse?
The fear that knowing is more harmful than not knowing is one of the most common things people say before their first session. What research consistently shows is that most people find uncertainty harder to live with than a clear answer. A defined risk comes with a defined plan — a screening schedule, a conversation about prevention options, a reason to act rather than worry. People who defer counselling often remain in a state of vigilance without any of the structure that makes it manageable. Uncertainty does not protect you; it tends to amplify the fear rather than contain it.
Does a positive result mean I will definitely get cancer?
No. A pathogenic variant means your lifetime risk is significantly higher than average — it does not mean cancer is inevitable. Many people who carry BRCA1, BRCA2, Lynch syndrome, or other high-risk variants do not develop cancer. Those who do are often found at an early stage precisely because they are in active surveillance, and an early finding changes the treatment options available. The variant tells your team where to look and how often. It does not determine the outcome, and that distinction matters.
What does a positive result mean for my children and siblings?
First-degree relatives — parents, siblings, and children — share roughly half of your genetic material. If you carry a pathogenic variant, each first-degree relative has a one-in-two chance of having inherited it. This does not mean they have cancer or will develop it; it means they may benefit from knowing so they can be tested and, if positive, enter surveillance at the right age. Genetic counsellors are trained to help you think through how to share this information and with whom, and they can provide a written letter you can pass to relatives so you do not have to explain the genetics yourself.
Is genetic counselling only for people who already have cancer?
No, and it is often most valuable before cancer develops — precisely because that is when preventive action is possible. People who seek counselling because of a strong family history are following a proactive path recommended by NCCN, ASCO, and ICMR guidelines. You do not need a cancer diagnosis to attend. Two or more close relatives with cancer on the same side of the family, cancer at an unusually young age, or cancer types that tend to cluster in inherited syndromes are all sufficient reasons to seek an assessment.
Can my employer or insurer use my genetic result against me?
In India there is no specific genetic anti-discrimination legislation equivalent to laws in other countries. Your genetic test result is part of your medical record and is subject to the same confidentiality obligations as any other health information under existing law. In practice, the risk of disclosure depends on how information is shared and with whom. This is a legitimate concern and one you should raise directly with your counsellor before you consent to testing. You are entitled to understand the privacy implications for your specific situation before making a decision.
Did you know?
Most people who attend genetic counselling leave with a more accurate — and often lower — estimated risk than they held before the session.
ASCO reviews of counselling outcomes consistently show that perceived risk before the session tends to be higher than the calculated risk after it. For many people, the session is reassuring rather than alarming.
Source: ASCO Educational Book, systematic reviews of genetic counselling psychological outcomes
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Common questions
Frequently asked questions
Is genetic counselling only for women?
No. While BRCA1 and BRCA2 are best known for breast and ovarian cancer risk, these variants also raise the risk of prostate cancer, pancreatic cancer, and other cancers in men. Lynch syndrome, which raises the risk of colorectal, urinary tract, and several other cancers, affects men and women equally. Anyone with a significant family history of cancer — regardless of sex — can benefit from an assessment. Men are often under-referred simply because awareness is lower, not because the risk is.
What is the difference between genetic counselling and genetic testing?
Counselling is the conversation; testing is the laboratory analysis of your DNA. Counselling happens before testing to help you decide whether to test and what you are consenting to, and again after testing to explain the results in context. Testing without counselling is technically possible but not recommended — a result without expert explanation, particularly a variant of uncertain significance, can cause unnecessary distress or false reassurance. Most centres offer both as a linked process, with the results appointment built in from the start.
What if the result is unclear — not clearly positive or negative?
This is called a variant of uncertain significance, and it is more common than most people expect. It does not mean cancer is likely; it means the laboratory cannot yet classify whether this particular change in the gene is harmful or benign. Your team monitors the evidence as it evolves and revisits the classification when more data becomes available. Your counsellor will tell you clearly whether this finding warrants any change in your management, or whether it is genuinely inconclusive and your surveillance schedule remains as it was.
Do I have to tell my relatives if I carry a gene variant?
You are not legally obligated to, but your counsellor will discuss it with you thoughtfully. Relatives who carry the same variant can benefit from surveillance that might find a cancer early or prevent it entirely. Most counsellors offer to help you draft a letter you can pass to relatives — you do not have to make the calls yourself or explain the genetics in person. This is one of the hardest parts of a positive result, and the counselling team is experienced in navigating it with families who are divided or geographically scattered.
What if I decide I do not want to be tested?
That is a legitimate choice and one that will be respected. The purpose of genetic counselling is to give you enough information to make an informed decision, and for some people that decision is not to test. Your counsellor can still provide risk guidance based on your family history alone and recommend a precautionary screening approach without a test result. Declining testing does not close the door permanently — you can decide to test at any point in the future if your thinking changes.
How do I know if I need genetic counselling at all?
NCCN, ASCO, and ICMR guidelines suggest genetic assessment is worth considering if two or more close relatives on the same side of the family have had cancer; if a relative was diagnosed at an unusually young age, particularly before 50; if certain cancer combinations appear in the family, such as breast and ovarian or colorectal and endometrial; or if a close relative has already been found to carry a pathogenic variant. If any of these apply to you, ask your oncologist or GP about a referral rather than trying to determine eligibility yourself.