‘Jeans, whose Genes?’ produced by Space2 by Michelle Scally Clarke

‘Jeans, whose Genes?’ is a culturally sensitive play and workshop, raising awareness of genomics and the impact of genetic disease that often runs unaware within families. Mixing humour, personal story and science, the play engaged with the large and diverse Black and Minority Ethnic population of Yorkshire and the Humber.

‘Jeans, whose Genes?’ is an innovative approach to getting people interested in genomics. The play and workshop creates a dynamic learning environment helping to influence debate around genomics, new technologies and the implications for individuals and families.

The play was developed in collaboration with Space2, the Yorkshire and Humber Genomic Medicine Centre, and focus groups from the Black Health Initiative and Shantona Women’s Centre in Leeds. The purpose of the groups was to embed co-production at the heart of the creative process and ensure cultural sensitivity and relevance in the script. The setting of the show over a garden fence came directly from participants. Some of the story lines of the play were also taken directly from responses during the focus group in relation to wariness or suspicion about medical developments, perceived experimentation amongst these communities, which they acknowledge is in part a hangover from prior experiences some decades ago, but also questions as to the relevance of some medical research to their ethnicity today.

As expected, there was no appreciation or awareness of the 100,000 Genomes Project amongst the groups that were consulted. Other political factors also influenced the debate around the technology and its implications. The writer therefore did not shy away from these concerns but chose to incorporate them into the dialogue, using the analogy of mobile telephone and internet technology to demonstrate life changing or enhancing possibilities in scientific developments to improve healthcare.

As NHS England develops a national Genomics Medicine Service it is important to engage with the harder to reach communities. This approach helps to break down cultural barriers and address some of the uncertainties and specific concerns that these communities have about genomics and healthcare now and in the future.