Genomics England
Co-designing informed consent for health research with minority ethnic groups
“It’s important to say that certain people are underrepresented, but someone might say, well, why are we being targeted? Again, because you’re after people from this group and this group and why do you want to know that with us?”
Genes are the blueprint for our bodies – they are basically like a set of instructions we inherit from our parents. The entire instruction manual is called a ‘genome’. A company called Genomics England, set up by the Department for Health and Social Care is aiming to look at the genomes of over 100,000 newborn kids to improve how scientific tests identify rare genetic conditions. For this to be successful they need to ensure that enough parents from minority ethnic groups consent to take part – otherwise they won’t have enough evidence to say with any certainty that these tests will or will not work. This is important as some minority ethnic groups are more impacted by genetic conditions (e.g. sickle cell disease).
We chatted to people who work with parents in various different communities across the UK. For example: advisors, health workers and care workers working with black African, black Caribbean, Indian, Pakistani and Gypsy, Roma and Traveller groups. This is what they told us:
There are lots of trust issues which will be barriers to people taking part, often relating to historical racism
There is a very low awareness of health research – what is it!?
The language that is being used to introduce the Newborn Genome Programme is too complex but also not specific enough. People want to know exactly how data will be used
It will be important to communicate the benefits of participating in the study – what am I going to get out of this, and how is it beneficial to my community?
Care should be taken not to target specific communities as that could feel offputting, but Genomics England could work through trusted local organisations and health services (like GPs) to reach people
For more information on the Newborn Genomes Programme see here.
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