Data-sharing in the time of COVID-19

Katie Compton, Policy and Politics editor

As the COVID-19 pandemic has upended our lives, we’ve all become health-data seekers. Each day, we scan our newsfeeds for information about whether we’re flattening the curve, wonder what the #NewNormal will look like, and search hopefully for any news about treatments or vaccines.

Answering the questions foremost on our minds – whether it’s how many new COVID-19 cases there were today or how we get to a vaccine – requires data, and lots of it. And researchers and regulators have recognized that in the face of this crisis, we need to find more efficient ways to share these data.

 

Free the data … with some limitations

Since the pandemic hit, policymakers at all levels of government have moved to ease restrictions on data-sharing, both to speed up research and keep vital services running while we try to stop the spread of COVID-19. At the federal level, the Office of the Privacy Commissioner of Canada issued an assessment framework to help government institutions leverage Big Data in their pandemic response while still observing Canada’s privacy laws.

There have also been temporary changes at the provincial level. For example, B.C. has eased restrictions on the types of digital communication tools that healthcare workers and teachers can use with patients and students, allowing the use of tools that would normally be off limits because they store users’ data on servers outside of Canada. But both federal and provincial regulators have emphasized that this flexibility in applying privacy laws will be temporary and strictly limited to efforts that address the COVID-19 pandemic.

Globally, researchers and research organizations have issued calls to open up COVID-19 data-sharing, arguing that some intellectual property restrictions need to be set aside for now. Organizations like Wellcome have issued statements calling for all peer-reviewed COVID-19 publications to be made open access immediately. The OPEN COVID Pledge, an international effort to get “holders of intellectual property to share their intellectual property for the purposes of ending and mitigating the COVID-19 Pandemic,” has been signed by some of the world’s largest data collectors, including Facebook and Amazon.

“Regulators showing that they are being flexible is much appreciated,” says Michael Beauvais at McGill University’s Centre of Genomics and Policy. “I think these messages are important at a symbolic level, but also in that [they] can be seeds for creativity.”

 

Researchers are already demonstrating creativity when it comes to sharing data about the SARS-CoV-2 genome. For example, nextstrain.org is an open-source platform that provides researchers and public health officials with a “real-time snapshot” of how viruses like SARS-CoV-2 are evolving as they spread. And DNAstack, a Toronto-based company that aims to help research teams around the world access and analyze genomic data from pathogens, was highlighted by Prime Minister Justin Trudeau for its COVID-19 Beacon, a cloud-based platform for sharing SARS-CoV-2 data.

 

An opportunity to revisit data privacy laws?

When it comes to sharing viral genomes, privacy isn’t an issue, but what about data related to human genomes, medical records, or contact-tracing? The pandemic has highlighted just how critical data-sharing is in a time of crisis. At the same time, it has raised questions about how to share data in ways that do not compromise our privacy.

“It’s fundamentally important to know that privacy law still applies,” says Dr. Brenda McPhail, Director of the Privacy, Technology & Surveillance Project at the Canadian Civil Liberties Association (CCLA). “That doesn’t mean that it’s not necessary to [ease restrictions], but it does mean that we run the risk of going too far.”

Both Beauvais and McPhail point out that Canada’s current laws weren’t written for the era of Big Data, and there is a need to modernize our approach to protecting individual privacy. According to McPhail, we need laws that are better able to address privacy concerns in a time of AI, machine-learning, and global companies that want to harness people’s data in ways that are not directly connected to the reason that they consented to share them in the first place.

“We don’t have appropriate safeguards for unexpected uses of information,” says McPhail. “Right now, our privacy laws are centered around consent and based on principles of purpose specification and data minimization. And those are very important privacy principles that the CCLA would want to see carried forward in new legislation. But it’s difficult to give meaning to them in a consent-based model in the age of Big Data.”

 

According to Beauvais, modernizing Canada’s privacy laws will require cooperation, consultation, and reasoned judgement. “We need to remember that norms – be they ethical, legal, or policy-based – are frequently trying to attend to multiple concerns that can pull in different directions. We may want strong, open science but we also want to ensure that individuals’ well-being and rights are protected at the same time.”

In some cases, keeping some data local could be part of the solution. Take the issue of contact-tracing, a strategy that has been proposed to help us monitor and contain future outbreaks of COVID-19:

“Individuals are cognizant of their privacy interests and many are skeptical of a centralized model whereby the data is sent to a central server for processing,” Beauvais says. “Decentralized options are being developed, and large swathes of the public demand it. Alberta’s [contact-tracing] app, which I believe is the first in Canada, looks to be [a] hybrid with much of the data staying on the device but some [being] sent for centralized tracing.”

Beauvais and McPhail both emphasize that individual privacy is a fundamental right and that the way forward, through this pandemic and beyond, will require a careful conversation about how to facilitate data-sharing without sacrificing privacy.

“These are conversations that have been happening for a long time, and all of the right people are involved, but not all the right people or groups have the same resources to engage in the conversation or make their way to the table,” McPhail says. “Industry will always have an important voice, as well as government…. We need to find ways to make sure that academic voices and civil society voices make their way to that same table.”

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Banner image by Matrix CC0 via Pixabay