Half of US citizens would share medical data beyond COVID-19 despite surveillance state worries

September 16, 2020 TH Author

Over half of US citizens are estimated to be willing to share their medical data and records due to COVID-19, and beyond, but fears of a surveillance state remain.

As the number of confirmed novel coronavirus edges close to 30 million worldwide, governments are seeking ways if not to eradicate infections, at least mitigate their impact on existing medical systems and reduce the pressure felt by hospitals to deal with the most severe cases.

One of the methods proposed is contact tracing, a concept based on individuals providing their details to places they visit — such as pubs or restaurants — as well as downloading mobile apps that automatically alert users if they have been in contact with a confirmed COVID-19 case.

Mobile-app based track-and-trace systems are at varying levels of development; Protect Scotland has recently rolled out and EU states have begun testing a region-wide interoperability gateway, whereas the UK’s promised “world-beating” system is a shambles.

These types of apps may be able to track the spread of COVID-19 throughout a population, but privacy remains a concern, especially if user mobile and location data end up in centralized servers able to be accessed by government agencies for purposes other than curbing the pandemic.

However, in the United States, at least, many are willing to try them out for the common good.

On Wednesday, Virtru published the results of a study exploring US attitudes on contact tracing and the release of their medical records in the fight against COVID-19.

The research is based on a survey conducted by The Harris Poll for Virtru in July and contains the responses of over 2,000 US citizens aged 18 and over.

In total, just over half of US citizens — 52% — said they were willing to share their medical records, even beyond COVID-19, with government agencies if this would help the pandemic response and healthcare in general. If they are given control over access to their own information and are able to block access or delete data at any time, 61% would be willing to do so.

However, when it comes to the information harvested from contact tracing apps, such as location and user data, 42% of survey respondents were not confident in their privacy being respected.

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In total, the most confidence is felt in tracing apps provided by healthcare providers and technology companies, with 34% and 28% of respondents saying they would trust them, respectively.

However, 58% are not confident when it comes to state and technology vendor-based app security and privacy. The idea of a “surveillance state” is in the mind of many, too, due to the US’ well-known mass surveillance programs, FISA, bulk data collection, and attempts to force technology providers to deliberately install backdoors into encrypted services.

In total, 62% of participants cited these issues as a potential barrier to their willingness in sharing health records beyond COVID-19 test results with government agencies. Overall, 31% of respondents said the government’s attitude on surveillance has a “major impact” on their willingness to share sensitive medical information.

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“As we continue to battle the pandemic, and at a time when trust in each other and institutions is most critical, we’re living in a massive trust deficit,” said Virtru CEO John Ackerly. “While we all love the convenience and access technology has afforded us, our personal information has become an economic engine and even a weapon, and as a result, we have very little control over it. So when we’re asked to give our most sensitive health information over to someone else, it’s understandable to fear that the data may be used and shared beyond what is asked.”

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