Impact of a digital platform on genetic counselling encounters in the screening context

Helping parents face tough health choices

When a child is seriously ill, parents are often asked to make rapid, complex choices about genetic tests that could affect their whole family. This study explores whether a digital tool called Genetics Adviser can give parents clear information at home, so that their conversations with genetic counsellors are easier and their decisions about extra genetic screening feel more informed and manageable.

What this digital helper is meant to do

Genetics Adviser is an online platform that guides people through videos, simple explanations, and example family stories about genetic screening. In this project, it focused on “additional findings” that can be looked for after rapid genetic testing done to diagnose a child’s urgent condition. These extra findings might reveal treatable childhood diseases, adult health risks in the parents, or shared risks that could affect future pregnancies. The aim was not to replace in-person counselling, but to let families learn at their own pace before talking with a specialist.

Who used the tool and how

The researchers invited 167 families across Australia, all of whom had a child who previously received urgent genomic testing in hospital. After those diagnostic results were returned, parents were offered several optional types of extra screening and were given access to Genetics Adviser in English. Just over half of families used the platform, with parents typically spending around 10 to 20 minutes on it. Most users said the amount of information felt about right, and they particularly valued short videos and realistic case examples that broke ideas into plain, step-by-step pieces.

How conversations with counsellors changed

All families who went ahead with screening decisions were offered a standard appointment with a trained genetic counsellor. The team recorded and analysed 80 of these sessions in detail, looking at how much time was spent on different topics, how often parents raised concerns, and what kinds of questions they asked. When all parents in a family had used Genetics Adviser, counsellors spent about one fifth less time talking specifically about screening, and families were less likely to need a second appointment. In these visits, counsellors also spent less time repeating basic facts and more time checking parents’ understanding and values, suggesting that the discussion could move more quickly into what really mattered to each family.

What parents learned and how they felt

Parents completed optional surveys before counselling, after counselling, and about a month after results. At every point, those who had used the digital tool answered more knowledge questions correctly about what genomic screening could and could not show. Simply having a counselling session did not raise scores much further, indicating that the main boost in understanding came from the platform itself. Most users later said the tool alone would have been enough to help them decide about extra screening, although some still wanted a counsellor to address complex medical situations or lingering worries.

Why this matters for future genetic screening

As more health systems consider offering broad genetic screening to patients and even healthy populations, there are concerns about whether there are enough specialists to support everyone. This study suggests that a well-designed digital tool can take on much of the routine explaining, while still leaving space for personal conversations when needed. By improving parents’ understanding and streamlining counselling sessions, platforms like Genetics Adviser may help make careful, value-based genetic decisions available to more families without overwhelming the health care workforce.

Citation: Mighton, C., Jan, A., Lee, L. et al. Impact of a digital platform on genetic counselling encounters in the screening context. Eur J Hum Genet 34, 715–722 (2026). https://doi.org/10.1038/s41431-026-02029-6

Keywords: genomic screening, genetic counselling, digital health tool, parent decision making, pediatric genetics