Different ways of explaining genomics

But it is helpful to understand the basics, especially if you are becoming involved in advocacy. Patient partners are often invited to help shape information for would-be patients or research participants and their families.

Responsible genomics programmes recognise that before anyone agrees to have genomic testing, they should be provided with an explanation about what’s involved. This should be grounded in their own cultural background, and age appropriate, in order to be most effective.

There is no single ‘best’ way to explain genomics. Different people find different explanations easier to follow and more memorable. Many different programmes around the world have sought to explain genomics in culturally appropriate ways. Some of these, such as the two examples below, have done so directly in partnership with the communities they were aiming to recruit into their programmes.

We include two examples here:

Example 1 is from the Australian National Centre for Indigenous Genomics: Talking about our genes and our health – Understanding Rare Disease (2025).

Example 2 is from Great Ormond Street Hospital for Children, UK: ‘My Genome Sequence’ (2017).

Task:

Please review these videos and then reflect: what do they have in common? Have you come across a different way of explaining the key concepts of genomics elsewhere, which you would recommend to your family or community?

The important point to remember is that different people will find different explanations of these concepts easier to understand and remember than others.

Example 1: Australia, ‘Understanding Rare Disease ‘, National Centre for Indigenous Genomics (NCIG), 2025

Example 2: UK, ‘My Genome Sequence’ Great Ormond Street Hospital Charity, 2017