Categories: Sanger Life31 October 20224.4 min read

Representation matters

Sasha Henriques has worked as a genetic counsellor for over 10 years, and is currently a Principal Genetic Counsellor at Guys and St Thomas’ Hospital. For her PhD at Wellcome Connecting Science, she is researching issues around race, ethnicity, data biases, and good research practice in genomics. This post explores some of the issues around race and representation.

As a Black female genetic counsellor, Sasha Henriques has often found herself ‘the one, the only’ in a room. As well as a lack of representation in the workforce, both in the UK and around the world, she has seen how inequality in the data used to inform genetic counselling has a direct impact on frontline clinical services.

Sasha is a passionate advocate for change. She is currently undertaking a PhD at Wellcome Connecting Science, studying the intersections between race, ethnicity, data biases, and good research practice in genomics. She aims to answer questions around what genomic science and genetic counselling needs to do to serve all communities fairly.

She recently spoke at the Wellcome Genome Campus about some of her experiences. Her talk was part of a series of events organised by the Race Equity Network on Campus during Black History Month.

This post covers the importance of representation that Sasha highlighted during the presentation. For her full talk, covering her career, motivations, and some of the history of race and genetics, you can watch the video.

On representation

Sasha has worked in both the UK and South Africa, and during her time there, she was surprised to find herself still the only Black female genetic counsellor, despite the different demographics of the country. She asked us - what does it mean if the workforce doesn’t represent the population it serves?

“What does it mean when you are holding people in their most vulnerable states, when you are asking them to share their values, their beliefs, in order to make decisions about their lives? And there's a barrier there that can't be reached, or could be better reached or more easily reached, if there was more diversity within the workforce, or a workforce that was more comfortable with diversity?”

She shared some powerful experiences of working in both places – specifically around language barriers. Many patients are expected or forced to speak in a language that isn’t their own. She recalled speaking to an elderly couple in the UK, where she was explaining complex and genetic concepts, and was able to switch to speaking Jamaican Patois, a language she grew up with.

“The feelings of using it… in a clinical setting felt so wonderful to me. And if that felt so wonderful to me, I wonder what it feels like for patients to be able to talk in their mother tongue,” she said.

Seeing the communication difficulties between patients and clinicians led her to set up training for genetic counsellors in her own department, around having conversations across cultural barriers.

“How do we shorten that gap a little bit more? How do we appreciate it a bit more, take a bit more time to meet those needs when we can see they are clearly there?”

While the representation that we want may be far away, Sasha noted that any steps towards it can make a big difference. Her training sessions changed her team – it changed how they thought, how they spoke to patients, and they became more comfortable with seeing patients from diverse backgrounds.

“I believe that diversity in the workforce improves clinical care … people trust those who they identify with,” she said.

“We know that representation matters. But also representation is hard.”

Beyond counselling

Sasha noted that her experiences as a genetic counsellor sit within a wider, global context. Racism, disparity and inequality exist across healthcare and science, and science funding.

For example, in academia, she shared statistics on Professors in UK universities. Of 22,000, 41 are Black women1. “If you can find the genetics ones, then please let me know,” she added. Research from the Royal Society and others has underlined issues of both recruitment and retention of Black and other Ethnic Minority groups in science.

Sasha highlighted what this lack of diversity in leadership can mean; “Discrimination and harassment, missing the mark, or kind of ‘tone deaf’ deliverables. And these have financial implications, and limit innovation.”

Beyond higher education, a lack of diverse data has huge impacts on research and health. She asked how much further ahead we would be if, from the start, scientists had identified the need for a truly representative reference human genome. In terms of healthcare, she noted that there is ample evidence, all over the NHS, that diversity data are missing, and the issues this can cause.

Genomics is racing ahead, and diversity needs to be at the front.

“If we diversify, what can we do? We can diversify thought, creativity, and bring in a wide range of skills. We can bring in understanding of the structural and systemic barriers - because people have lived those. And this attracts more diverse staff, retains more diverse staff, and helps us to engage better with society, because we understand them and we are them.”