Deciding to have a child is a deeply personal decision. But what does it mean to plan for parenthood when science suggests a child may face illness? As prenatal genetic testing becomes more common, prospective parents are increasingly confronted with complex choices where medical insight intersects with personal belief, ethics, and hope.
While prenatal gene testing promises clarity, it can also introduce new layers of uncertainty. Learning that a future child may be sick is rarely about finding a single right answer. Instead, it often involves understanding risk rather than certainty, recognising the limits of medical prediction, and weighing the emotional and ethical impact of information that science can now provide. Experts emphasise that genetic knowledge should support families with preparedness and perspective, not pressure them towards any one path.
What prenatal genetic testing can and cannot tell us
Modern prenatal genetic testing has advanced rapidly. According to Dr Rashmi Talwar, Lab Head and Head of Genomics at Agilus Diagnostics, Gurgaon Reference Lab, today’s tests combine non-invasive screening with confirmatory diagnostic procedures.
“These tests can accurately detect specific gene mutations or structural or numerical changes in DNA or chromosomes in the fetus,” she explains. This early insight can help families and doctors plan medical care, prepare for specialised delivery, and in some cases reduce the risk of passing on severe genetic disorders through options such as preimplantation genetic testing during IVF.
However, genetic testing has clear limits. “While tests can identify the presence of a genetic mutation, they cannot always predict how severe a disease will be, when it will manifest, or whether it will appear at all,” Dr Talwar says. "Additionally, it is not possible to correct these changes or prevent hereditary disorders," she adds. Many inherited conditions show wide variation, and some may never fully develop. Genetics, as experts repeatedly emphasise, does not equal destiny.
Risk is not the same as certainty
One of the most misunderstood aspects of prenatal testing is the difference between screening and diagnosis.
Screening tests, such as maternal serum screening or non-invasive prenatal testing (NIPT), indicate risk, not confirmation. A high-risk result means the likelihood of a condition is higher than average, not that it will definitely occur. Conversely, a low-risk result cannot rule out all genetic changes.
“Parents should view screening results as an early warning and a starting point, rather than a final diagnosis,” Dr Talwar notes. Confirmatory diagnostic tests, genetic counselling, and clinical correlation are essential before drawing conclusions.
Dr Shrinidhi Nathany, Consultant Molecular Haematologist and Oncologist at Fortis Memorial Research Institute, agrees. Even when a specific genetic variant is identified, its real-world impact may remain uncertain. “The presence of a variant does not always translate into severe disease,” she says, underlining the importance of careful counselling to distinguish statistical probability from lived reality.
As Dr Talwar notes, “Every genetic test result is interpreted in context and supported by expert counselling, empowering families with clarity rather than fear.”
What genetic insight means for parental responsibility
Learning that a future child may be ill does not redefine what it means to be a parent, experts say. Instead, it often offers families time to prepare medically, emotionally, and practically.
“Ethical responsibility does not change, what changes is awareness,” Dr Talwar explains. Prenatal testing should inform, not dictate. Decisions about continuing or planning a pregnancy remain solely with prospective parents, shaped by their values, beliefs, resources, and circumstances.
Dr Nathany echoes this view, noting that genetic knowledge “enlarges the space for informed and reflective choice” rather than imposing a moral obligation.
Balancing early awareness with compassion
Used thoughtfully, prenatal gene testing can reduce uncertainty and anxiety. Early awareness allows families to plan deliveries at specialised centres, arrange early interventions, and connect with existing support networks.
However, both doctors caution that fear and stigma can arise when results are delivered without empathy. Poor communication may unintentionally reinforce harmful ideas about disability or quality of life.
“The language and tone used during disclosure are as important as the data itself,” Dr Nathany says. Ethical reporting and compassionate counselling help ensure that testing supports families instead of narrowing perceptions of what a meaningful life can be.
The doctor’s role in counselling
Experts are clear that doctors must guide without directing. Doctors should:
- Explain medical facts and possible outcomes clearly
- Discuss available options without judgement
- Respect parental autonomy at every stage
“Medical professionals guide, explain, and support — they should never pressure or influence decisions based on personal beliefs,” Dr Talwar stresses. Empathy, respect, and non-judgemental communication are essential, particularly after abnormal results.
Preventing pressure-driven parenting
As genetic screening expands, safeguards are crucial. Pre- and post-test counselling, transparency about limitations, and adherence to laws such as India’s PCPNDT Act (Pre-Conception and Pre-Natal Diagnostic Techniques Act, 1994, amended 2003) are all vital.
At a broader level, laboratories, clinicians, and policymakers must ensure testing is framed as a tool for preparedness, not perfection. Awareness and ethical practices help prevent genetic knowledge from becoming a source of social pressure.
Ultimately, prenatal gene testing is about equipping families with knowledge, and the space, to make deeply personal decisions, guided by science, compassion, and respect for individual choice.
This report is for informational purposes only and is not a substitute for professional medical advice.
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