Pre-conception genetic screening for conditions of uncertain or variable prognosis: social and ethical implications (360G-Wellcome-203384_Z_16_A)

£38,100

Awarded funds are for: - Developing a multi-media art installation from the research findings with the artist, Esther Fox. This installation will include an immersive soundscape capturing the complexities of genetic screening using voiced verbatim text from interviews and an interactive computer game that navigates players through life-like scenarios relevant to genomics. Many disabled people, however, face barriers when participating in cultural life, and a static exhibition does not adequately remove these. Additional funds are therefore requested to increase the inclusivity and accessibility of the installation through the use of touring and production of a film for digital dissemination. Given the centrality of the views of people with disabilities to this research, inclusivity and accessibility are of paramount importance. To achieve this we will: - Collaborate with a digital theatre and media company, STAMP, to create a touring installation. This will be exhibited for 4-5 months in 2019 at approximately five UK Science Festivals and other public venues (e.g. Cheltenham Science Festival, British Science Festival, Think Tank Birmingham). - Film the touring installation and conduct 2-3 minute ‘sound bite’ interviews with attendees. - Post the resulting film on the project website/social media accounts. Also link it to the websites of relevant charities and organisations (e.g. Genetic Alliance UK, condition-specific support groups, GeneWatchUK, US Center for Genetics and Society) - Submit the film to ‘Disorder’, the International Rare Disease Film Festival. - Evaluate the impact and reach of the installation and film through interviews, written and electronic feedback and social metrics.

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Grant Details

Amount Awarded 38100
Applicant Surname Boardman
Approval Committee Research Enrichment, Public Engagement
Award Date 2018-04-05T00:00:00+00:00
Financial Year 2017/18
Grant Programme: Title Research Enrichment - Public Engagement
Internal ID 203384/Z/16/A
Lead Applicant Prof Felicity Boardman
Partnership Value 38100
Planned Dates: End Date 2022-01-31T00:00:00+00:00
Planned Dates: Start Date 2018-11-01T00:00:00+00:00
Recipient Org: Country United Kingdom
Region West Midlands