You, exposed for the world to see
DNA sequencing can help fight epidemics, but there are privacy risks
THE DEMOCRATIC Republic of Congo is battling an Ebola outbreak. As is the case with any disease caused by pathogenic viruses, Ebola spreads dangerously and unpredictably. This makes tracking the movement of viruses across the world a major challenge.
Researchers have turned to DNA sequencing to help identify and track these sorts of diseases. They use portable DNA sequencers, which are the size of a USB and can be easily carried for use in the field. One such sequencer, the MinION from Oxford Nanopore Technologies, was used during the 2016 Zika virus epidemic in Brazil. It’s also used to track the Ebola outbreak.
Some researchers hope it will soon be possible to combine sequencing data collected in this way with other information to tell us more about disease outbreaks. Integrating different kinds of data into a global infectious disease surveillance system that scans for new epidemics might make it possible to detect outbreaks and viruses as they emerge, allowing public health responses to be suggested in real time.
There’s no doubt the efforts are driven by good intentions. But, as we argue in our new research, the technology – which supporters hope will become increasingly available to members of the public – could have serious privacy implications.
Metagenomic data – the kind that could be collected on a sequencer such as MinION or others such as the Chan Zuckerberg Initiative’s new platform IDSeq – contains an enormous amount of information about who we are and how we live. In combination with other available information someone could potentially use that data to work out where you live, or with whom you have a close relationship.
Imagine having an app on your smartphone that allows you to analyse samples from the world around you. You could use it to sequence your pet cat’s DNA, or to figure out whether the mould growing in your shower is dangerous. The technology required is here. For example, the Chan Zuckerberg Initiative recently announced IDSeq, a new platform and database for infectious disease surveillance where registered users can upload their metagenomic sequencing data to have it analysed for free.
There’s just one catch: you have to sign over permissions to the data. Most people will do this unthinkingly. Author Jamie Susskind has called this “the data deal”: people accept whatever a company asks so they can use an app or product, and worry about the implications later. This is the case with IDSeq. Researchers became concerned when they realised the platform’s terms and conditions contained a clause granting the Chan Zuckerberg Initiative “perpetual” permission to “use, reproduce, distribute, display and create derivative works” from it.
The justification given is that it’s intended to permit users’ research data to be used for improving IDSeq. However, in principle the data could later be shared with “any third party that purchases” part of the assets or organisation. The data contains vital information about your microbiome – the vast collection of microorganisms that live on and in our bodies. And your microbiome can tell someone an awful lot about you.
The microbiome contains information about our lifestyles, like our diet and drug intake, and our social relationships. That’s a lot of information to work with, in a world where we share a great deal of data about ourselves via platforms like Facebook. This data could feasibly be merged with metagenomic data, making it even more powerful.
There are examples of incidental data being used in ways that are far removed from the original reasons for collecting it. Data from a murder victim’s Fitbit was used to convict her killer. And data from users of the fitness app Strava inadvertently revealed the location of secret US army bases.
There is every reason to believe that data from portable sequencers collected for disease surveillance would contain information that could be used in similarly concerning ways. Metagenomic sequencing data is personalised. It contains information about who we interact with and where we go, which makes it commercially valuable.
We need to continue scrutinising these organisations to make sure we understand what’s being done with our data. The consequences of widespread portable sequencing, like emerging infectious diseases themselves, will be highly unpredictable.