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Genomics England- Alev Sen, Sociology

Alev Sen
Sociology
External Partner: Genomics England
Project title: Developing a Social Science, Ethics and Law research and evaluation plan for the 100, 000 Genomes Project

Summary

The project was created to develop further research work via the Ethics and Social Science Genomics England Clinical Interpretation Partnership (GeCIP). These are the main research collaborations of the 100, 000 Genomes Project. The work of this GeCIP is therefore not just of significant interest to social sciences, but also to policymakers, and the wider public.

The primary aim of the project was to help drive forward the Ethics and Social Science GeCIP’s research and evaluation planning. Broken-down, the intention was to use my efforts to further engage members of this group, including academics and researchers, to support their crucial work in this area. A key objective was for me to organise an event or workshop with GeCIP members to help Genomics England assist them with this.

I organized an all-day conference held at the Wellcome Collection in London engaging members of the Ethics and Social Science GeCIP. It was the first national event for this community held by Genomics England. The event included keynotes by the Chief Medical Officer, Genomics England’s Chief Scientist and senior academic experts in bioethics, as well as insightful sessions with participants of the 100, 000 Genomes Project, and informative presentations by Early Career Researchers working in the field.

I am not sure I had anticipated pulling together something quite so high-profile and lively; it was a real privilege to work on such an important project. Evaluation from attendees and colleagues at Genomics England has also indicated that this work will support the GeCIP in its next phase. It was positive to see support and recognition for the vital role of Ethics and Social Science research in the future of genomic medicine and science from a range of key stakeholders including the Department of Health and Social Care, NHS England and Patient Organisations. My summary of the day was published by Genomics England here: https://www.genomicsengland.co.uk/ethics-and-social-science-a-community-in-partnership/

Ultimately this experience has been beneficial for my professional development. From juggling the diary schedules of some very busy people, to securing extra conference funding, and organizing an inclusive and relevant agenda, delivering the project to time and specification was an important challenge to meet. One of the biggest things I learnt was how to maintain my focus and drive and continue to aim high.

I also now know a lot more about the potential ethical and social implications of genomics from having read-up and listened-in on essential debates as they were happening ‘live’ so to speak. I would be interested to explore options for future work in this area after my PhD.