Background

Engagement with sensitive topics

Our research on the social and ethical impact of genetic screening encompasses several controversial subject areas that are highly emotive and have the potential to produce strong reactions as well as distress. These include:

• health and disability,
• experiences of healthcare,
• prenatal testing and pregnancy termination,
• bereavement (including pregnancy and child loss),
• social discrimination and stigma,
• the boundaries between quality of life and suffering,
• the various ways that a ‘life worth living’ is understood.

Whilst the general public typically have low levels of awareness of rare genetic conditions, and many will be unfamiliar with the scientific concept of genomic medicine and how it relates to them, these themes of health, disability and quality of life cut across human experience in various ways, making them potentially controversial topic areas for large numbers of people.

Despite having a very large and rich database of resources, we were limited to the quantity of information that could be presented based upon the amount time we expected a member of the public to engage with the installation (between 10 and 15 minutes). The research data was gathered from many people with wide ranging experiences and viewpoints. Being sensitive to this diversity of opinion – and authentically representing the research – while providing the right level of information to enable the viewer to contextualise the relevance to themselves, within the constraints of an art installation, was a significant challenge.

We took the approach of using the words of the research participants themselves, with a limited amount of additional factual/scientific explanation to add context. By using the stories of real people described in their own words, combined with the video images of diverse faces, we created what we hoped would be a relatable and accessible experience for audience members, whilst not oversimplifying or trivialising the issues.

To ensure that we met the various aims of accessibility and authenticity, the I:DNA team (creative collaborators and researchers) spent a considerable amount of time discussing and debating which excerpts to use from the research interview transcripts. Vital to this process was the depth and variety of experience of the team. Some team members have genetic conditions themselves, and through her research and policy work, Felicity has many years of experience advocating for people with disabilities and rare genetic conditions. Other team members had no specialist knowledge or experience with genetics and were able to approach this as proxy members of the public.

Some of the stories were voiced by actors and others were sung by choirs. Music can elicit positive and negative emotions to the listener and the positioning of singing created an interesting – and at times jarring – juxtaposition between the information being conveyed and its presentation. At intervals, statistics about the frequency of genetic conditions were displayed to remind/inform audiences that, although individually rare, genetic conditions collectively can – and do – affect a significant number of us, and that we are all likely to be the ‘carrier’ of at least one genetic mutation.

We provided a link to our research web pages for anyone who was interested in finding out more about the research. We also have links on our web page to the main support groups related to each of the conditions, should any of the visitors have needed support or wanted more information. We also publicised our resource email account for the installation at each location (and associated events), so that anyone with questions or concerns could contact the research team directly.