Privacy concerns over digital disease detection

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By Rachael Brown, staff

Social media is an increasingly popular way for governments to detect disease outbreaks, but there are now concerns about how online data can be used for health purposes.

The ability to track the spread of diseases on digital platforms like Twitter can help authorities respond more quickly to outbreaks, as recently seen in West Africa where social media tracked the spread of Ebola long before official government reports.

But now there are questions over whether data mining of social media and other material – such as records of what drugs and medicines are being purchased, and where – is breaching users’ privacy and trust.

In an article published in PLOS Computational Biology, experts recommend the establishment of digital disease detection (DDD) monitoring boards to monitor what data is being used and compensate people who may be unintentionally harmed through data scraping.

The article highlights the fine balance between individuals contributing to the greater good and the right to individual privacy.

Dr Suelette Dreyfus from Melbourne University’s Department of Computing and Information Systems agrees technology is outpacing legislation and new guidelines are needed.

“You have to think about when you turn on your location function on your iPad, in terms of privacy and health data, it’s potentially like a giant neon red arrow on your head…here are my health problems,” she said.

People should be entitled to see all the information about themselves that organisations use, she added.

Dr Dreyfus also warned that ‘big data’ is not always correct.

“We saw when Google Trends got it wrong trying to predict the flu outbreak…turns out Google was wrong.” she said.

The World Health Organisation is currently developing guidelines for ethical DDD practises.