What do families think about genetic testing? new study seeks answers

NCT ID NCT02814747

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This completed study from France involved 530 families of children with rare developmental disorders. Researchers used surveys and interviews to understand how families feel about high-throughput genetic sequencing, including unexpected findings. The goal is to improve how doctors inform and obtain consent from families before using these advanced genetic tests.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this research could help doctors better explain genetic tests to families and improve how consent is obtained for advanced sequencing.

What could go wrong

This is an observational study, not a treatment trial. It gathers opinions and experiences, so it won't directly change medical care or outcomes.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Contacts and locations

Locations

  • CHU Dijon Bourgogne

    Dijon, 21079, France