Genomics England

So I guess this is the next step after the heel prick.

So, uh, Genomics England, uh, working with NHS England is running, uh, exactly as you say, Sandy.

It's called the Generation study.

They began recruiting in twenty twenty-four.

Exactly.

I wonder if that's really been fully costed.

I don't know if that, you know, when they've been looking at the, the size of this program, uh, Genomics England, has that really been fully costed, the, the substantial effort that's going to be required to manage the outcomes that we find from the research and the examination of all this data?

Yeah, that's really interesting.

Today we're exploring Black communities and health research.

Why do some people feel that research isn't intended for them? What role does trust play in participation? And what needs to change to improve health outcomes now and in the future? I'm Sharon Jones and joining me today are Christella Motoko from Genomics England, Shagan Futuma, Professor and Chair of Genomic Diversity at Queen Mary's Hospital London, whose work focuses on improving representation and equity in genomic research, and Hazel Ochoa, who's a member of the participant panel at Genomics England.

A warm welcome to everyone.

So before we dive into these topics, let's start first to try and understand how people perceive research and how that can often influence whether they feel it's something for them.

Although I might look at it from this lens, the whole of the Black community might not.

I have the knowledge of medical care.

I work in Genomics England, so I understand the benefits of health research and how it can improve outcomes within the healthcare.

But when you speak about it in terms of the Black community, research doesn't necessarily sit naturally because of all of the historical mistrust that we've you know encountered

Very grateful for people like Peter Johnson and John Bell.

And of course, Genomics England, because they want to see drugs being made in the UK for cancer vaccines.

And so we decided to give it a go.

Their ambitions are bold, and they were bold at the time, but we're on set to deliver them 10,000 patients through trials, advances across multiple disease types, and to stimulate an ecosystem which will then go and cause a global advance across the world.

What do we mean by the word equity? My name is Florence Cornish, and today, I'm joined by Sasha Henriques, who is director of equity assurance here at Genomics England and also has a PhD specifically looking at social justice in genomics.

And Sasha is here with us today to tell us much more about the topic.

So Sasha, I think with this topic, when it comes to discussing equity in healthcare, a good place to start might be by acknowledging that not everyone has the same experience with accessing healthcare or the same outcomes even when they do access it.

Yeah.

So actually, that really simple explanation that I gave can become really quite complicated when you think about something like genetics.

And so you took on the role of director of equity assurance at Genomics England-

Yes

... earlier this year.