Dr Luiza Bengtsson and Dr Emma Harris of the ORION Training Team together with their fellow MDC scientists Professor Uwe Ohler and Dr Philipp Boß held a citizen science session about their research topics at the re:publica conference in Berlin in May and discovered the fears and fascination sharing health data holds for the public.
'Have you ever Googled your symptoms?' Most people would answer 'yes' to this question, using the internet to find information is a normal part of life in European society. However, if the question becomes 'Would you put your genome sequence online?' then even those people with a big 'digital footprint' and a consistent social media presence would hesitate. In both these scenarios a person is electing to give away their health data, but there are differences in what people find acceptable.
It was this question of public concerns and opinions about using health data that Professor Uwe Ohler and Dr Philipp Boß, two scientists from the MDC, wanted to ask. Their research topics focus on the potential of health data to be used in combination with machine learning to better understand diagnostic criteria for diseases. However, the health data that is obtainable for research varies between different European countries. To get a clear idea of what non-professional scientists actually thought about the use of health data in research a group of technologically informed citizens from across Europe was required.
Matching patient data against lifestyle data
An opportunity to talk to such a group came at re:publica, a unique digital culture conference in Berlin that attracts a huge international attendance. The location of the meet-up was buzzing with activity; it was in a huge industrial hall with exposed brick walls. The glass roof let in the bright sunlight and conference attendees wandered through it. In the corner of this large noisy room, Ohler and Boß were joined by Dr Luiza Bengtsson of the ORION Open Science Training Team and a crowd of engaged participants who were sat on oversized steps like in an amphitheatre.
The researchers and the participants talked to each other excitedly for over the allotted hour. Both groups asked questions of the other and a variety of opinions and ideas emerged. The participants were particularly interested in precisely what information could be extracted from genomic data. Ohler gave the example of ‘the work of Genomics England who have used genomic sequencing to find the genetic changes responsible for rare diseases and cancers’. However, Ohler also pointed out some risks in making genomic data public, such as the fact that ‘if you put your genome online you also make your children and parent’s genetic data available’. Some participants raised other fears, for example that insurance companies could use information about an individual’s current or even potential health (e.g. the genetic likelihood of developing cancer) to discriminate against them. While other participants had ideas, such as matching patient data against lifestyle data e.g. fitbit or food apps.