Potential Benefits and Dangers of Big Data Analytics

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In this episode of Impetus Digital‘s Fireside Chat, I sit down with Brenda McPhail from the Canadian Civil Liberties Association. We talk about a myriad of different subjects related to information-gathering and surveillance in Canada, and how this information is being used. We explore meaty topics such as mobile health technologies, cybersecurity risks of DNA testing, health data ownership, and privacy issues that have risen from the COVID-19 pandemic. Additionally, we dive into the privacy and surveillance issues surrounding emerging technologies such as artificial intelligence, virtual reality, blockchain, face recognition technology, and more.

Below is a preview of our conversation: 

Q: In the next 5–10 years in Canada, what is [the future of data privacy and demonetizing healthcare data] going to look like and what is your aspiration for the average Canadian citizen?

A: First of all, I would be careful about the idea of allowing monetizing personal data, whether through blockchain or any other interesting innovation. Because one of the real concerns in the privacy community is that privacy will be something that you can only afford to choose for yourself if you’re affluent, if you’re rich, if your position in life is such that you don’t need to sell your information and that it can genuinely be a choice for you to sell your information. So as with all kinds of technology where there’s an exchange, it is often one party that’s got power and one party that has far less. And when it comes to information about people who are socioeconomically disadvantaged, people who are racialized, people who are vulnerable, people who suffer from disabilities or health conditions that render them potentially more valuable for some markets, but at the same time more vulnerable, I think we have to be very careful about looking to monetization of data as a solution that will lead to a safe equitable society. I have very serious concerns about the ways that that could play out against those values of equality and privacy.

I think that we need to start thinking as a society about where our values lie and what the legislative means to protect them are. That’s something that is hard. The Charter of Rights and Freedoms in Canada actually ranked in a survey a year or so ago over hockey as something that Canadians were most proud of in our country. So even in a culture where we have a really strong connection to the idea of a shared set of rights and values that form the foundation for our society, we’re still going to disagree about the way that those values need to be protected and safeguarded when it comes to legislation and when it comes to trade-offs between absolutely open potential for exploring and more ways to narrow the scope of exploration, to make sure that it’s as open as possible while still having a set of core values. Those conversations are going to be really hard. And the way that we need to have them is by being really open about it and by bringing all the parties to the table and making sure that no one group is able to speak louder and longer than others in terms of influencing the process.

So I think that the way that our privacy law ends up being reformed in the next 1–3-year time frame, which is when I think many of them will be done, is going to determine what kind of society we live in for the next 15 years. If we don’t solve the underlying problems of surveillance capitalism and the idea that data is purely about economic benefit to the detriment of social good and democracy itself, democracy itself is going to falter as we move forward. And I think that that kind of thinking needs to inform the ways that we approach innovation, the ways that we approach data and data governance, the ways that we approach privacy, the ways that we allow or don’t allow new forms of surveillance in our society. Understanding that surveillance is not necessarily a negative thing. It can also be a positive thing. Surveillance is sustained attention to an individual’s behavior for purposes of management influence or protection. So there are legitimate and important cases of surveillance in our society, particularly when it comes to public health, as well as dangerous and problematic uses from a rights perspective. All those complex, nuanced questions about what we care about, what we want our world to look like, and then how we can develop laws that will take us there need to happen really soon. And we shall see what comes of it…

For more of our discussion, you can watch the whole Fireside Chat with Brenda McPhail, or listen to the podcast version, below.

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About Impetus Digital

Impetus Digital is the spark behind sustained healthcare stakeholder communication, collaboration, education, and insight synthesis. Our best-in-class technology and professional services ensure that life science organizations around the world can easily and cost-effectively grow and prosper—from brand or idea discovery to development, commercialization, execution, and beyond—in collaboration with colleagues, customers, healthcare providers, payers, and patients.

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