Social categories like race and ethnicity play a complex role in emerging technologies. We sat down with researcher and founder of Genetics Engage, Sasha Henriques, to explore how structural inequalities shape and influence genomics research and what we can do to make it more equitable.
UN: Can you tell us a bit about your research and what inspired you to get into this field?
SH: My project looks at race and ethnicity and genomics. When and how race or ethnicity is used in research data; the language used as descriptors of race and ethnicity and who decides this; and how do we ensure equity in benefit from genomics and health research.
I worked as a genetic counsellor for many years. Supporting families with genetic disease. Anecdotally, I noticed that the cultural diversity I saw every day was not always seen in my clinics. Also, the data from research used to inform genetics and the genetic counsellor workforce wasn’t also representative. I began to wonder how such gaps could affect a service and its ability to serve all communities fairly.
UN: At the Utopia Now launch event you spoke about how race and racism impacts scientific research and discovery. What role does it play in your research? How can scientists work to address these issues and build a more racially just world?
SH: In my research I think about the harm and the good from the different ways that scientists group the human population to understand genetics and the impact of genetic research. This means that I also investigate how ideas of race and ethnicity have changed in history. The effects of ideas around race and racism have impacted everyone getting the same benefits from the findings of genomic research. Some groups get less benefits than others.
In my research I have to think carefully about how I see my own identity and others and how this shapes the way I will do my work. I hope that my work and other work in this area will help scientists reflect in the same way. This may help them do research that helps society with its challenges around race and racism rather than make it worse.
In my research I think about the harm and the good from the different ways that scientists group the human population to understand genetics and the impact of genetic research. This means that I also investigate how ideas of race and ethnicity have changed in history.
UN: Did any of the pieces or performances from Utopia Now stand out or speak to you? Why?
SH: Laura’s story about how an AI system based on your genes then controls your life was wonderfully written. As well as loving science for a long time I have also loved science fiction and so I gripped. I think science fiction are good ways to make us thing about what type of future we would and would not accept as a society.
UN: We had a lively and reflective conversation with young people about their hopes and fears for the future. What did you learn from the young people involved and what key messages did you take away from the event?
SH: I learnt that young people care about their future and that trust and openness from science and authority is something they want more of. Engaging with each other to talk more about our fears and hopes is an important way to help researchers do work that is important to everyone and that is fair.
UN: What do you think scientists like yourselves can do to help make a better future for young people?
SH: I hope that by talking about what I do now and sharing how I got to where I am it will encourage young people to be hopeful about their future and their power to shape it.
UN: What role can young people play in the future of science?
SH: Any role they want …they are the future.
Sasha Henriques is a PhD student carrying out an innovative new PhD project, developed by Wellcome Connecting Science and the Wellcome Sanger Institute to explore structural inequalities in genomic research through the use of race, ethnicity and ancestry categories.
A principal genetic counsellor at Guy’s and St Thomas’s NHS trust, UK. She is course director on their Equality Diversity and Inclusion for Genomic Professionals Training. A committee member of the Association of the UK Genetic Nurses and Counsellors (AGNC) she was instrumental in convening the associations first subcommittee on Equality, Diversity and Inclusion. She also designed and delivers cross-cultural communication teaching for the MSc in Genetic Counselling at Cardiff University and the Scientist Training Programme (STP) for genomic counsellors in England.
She is an advocate for sharing genetics with all communities and believes that true inclusivity goes far beyond the patient-clinician interaction, as such she co-founded Genetics Engage a public engagement platform to promote inclusivity in all things genetic.