Your DNA, Your Say – public opinion on data sharing

Anna gave this invited presentation at the Cambridge festival organised by the Cambridge Rare Disease Network targeted to the general public
1st December 2018

Description of event from RAREfest's websit:

WHY RAREFEST? AND WHY A PUBLIC EVENT?

It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively.  Free to attend,  this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this.  RAREfest will raise awareness of rare conditions and bring together all stakeholders in  the rare disease community alongside the general public from across Cambridgeshire and beyond.

WHAT IS A RARE DISEASE?

In the EU, a disease is classed as ‘rare’ when less than 1 in 2000 people  suffer from it. There are between 6,000 – 8,000 discovered rare diseases, including more well known diseases such as Motor Neurone disease, Cystic Fibrosis, and Huntingdon’s Disease. Around 80% of rare diseases are genetically derived.

Description of Anna's talk from RAREfest's website:

Talk synopsis: Big Data and DNA now go hand in hand. This is pivotal for exploring the link between genes and disease. The bigger the datasets the better. Most DNA data is ‘de-identified’, i.e. names and addresses have been removed. However, it will soon be possible to identify a person from their DNA alone. Would this stop you donating your DNA data for research? What harms can come from this? We explore what public across the world have said and how their views are shaping policy.

Bio: Anna has had two parallel careers – the first as a practicing genetic counsellor in the NHS working with families with genetic conditions, the second as a lead social scientist exploring the impact of genetic technology on people. She currently works at Connecting Science at the Wellcome Genome Campus in Cambridge, as Head of Society and Ethics Research. She is continually asking: ‘how is genomics impacting on people?’ and aims to find evidence-based ways to make genomics resonate for patients and their families. She is current Chair of the Association of Genetic Nurses and Counsellors.

Click to visit the Wellcome Genome Campus website.

(To view Anna's PowerPoint presentation in its entirety, the MP4 video file is recommended as the presentation included numerous embedded video files which are not viewable in the PDF file)

Citation:

Middleton A (2018). Your DNA, Your Say – public opinion on data sharing. RAREfest 2018. Cambridge, UK, 1st December. Spoken presentation