'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, a science communicator from the MDC working on the ORION Open Science project, 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.
Preserving data is a priority
The discussions in the session took a turn towards the details of research practice towards the end. A participant asked whether the research protocol is to destroy patient data after a study, Ohler stated that actually ‘preserving data is the priority because this enables studies to be reproducible’. Anonymisation was another concern that was raised, in particular whether patient data is truly anonymous and if so how useful data without identifying features can even be for research.
Linking to this point, another participant added that too much genetic and health data comes from ‘white males’ and as such it can lack the necessary diversity to be helpful in research. Boß agreed, saying ‘the greater the diversity of the data, the better our understanding will be’. These are issues usually raised at ethics conferences and committees so it was fascinating to see that people who are not directly connected to research care so deeply about these topics as well.
The session culminated with a call for anyone interested to get in contact so that a more detailed exchange of ideas could be had. But even in the one-hour slot, it was clear that as Bengtsson said ‘there is a strong desire from the public to understand and discuss the practices and consequences of science’. Ohler and Boß outlined the ways in which large-scale health data can be used for a social good – to diagnose and even treat diseases more accurately. However, health data is also the most personal type of data. The data belongs to people and scientists can benefit greatly from knowing the views of those people … and they might just have the next great research idea!