In this guest contribution by Dr Anna Middleton, Head of Society and Ethics Research at the Wellcome Genome Campus, we hear about her research into understanding what genetics means to people. The global research project Your DNA, Your Say, which she leads, is an opportunity to be heard in policy that affects all of us.
"I am fascinated by family – the silver thread of DNA that links us to our biological relatives."
My research involves trying to understand what genetics means to people. It’s possible to test for 20,000 genes in a single blood sample; this is available now in the NHS in England and other health care systems around the world. Why is this relevant to you? Even if you are not using any health services at the moment, you might be biologically related to someone who is.
This fast paced new age has given rise to unique ethical and moral questions that my group explores. Genetic research has the potential to unlock so many answers in medical diagnoses and treatment. However, this can only be successful if DNA and medical data is donated by thousands (or ideally, millions) of people, and then stored in online databases where it can be accessed by scientists and researchers from all over the world. But how do people feel about their genomic data (their entire blueprint, more personal than a fingerprint or an iris scan) being incorporated into Big Data?
I’m leading a new global research project, called Your DNA, Your Say, which takes the form of a ‘film-survey’ experience. First, a series of short films introduces participants to the practical and ethical issues of DNA and medical data sharing; then, a survey follows in which participants are asked fortheir views on data donation and whether they perceive any harms associated with this.
A selection of the films has found an audience as a standalone piece, and to date it has been selected for three film festivals. In 2016 it screened at the Raw Science Film Festival in Los Angeles and Viten Film Festival in Bergen, Norway and it was selected to screen in the New Filmmakers New York 2017 winter showcase, where it screened in January.
If you’d like to learn about DNA and Big Data and explore some of the ethical issues this could raise for you, then watch our films and use our survey as a way to find out more. It gives you a chance to think about what this means for you, and as you work your way through it, we get to understand your viewpoint. Thanks so much for being part of the conversation, this means you will be heard in policy that affects all of us… www.YourDNAYourSay.com
Middleton, A (2017). Your DNA, Your Say. [Blog] Gene Advisor. Available at: https://www.geneadviser.com/blog/your_dna_your_say/ [Accessed: 21 February 2018].