Who owns your data?
by Chad Sansing | A spotlight on Whose Data?, a 2018 Global Sprint project
Whose Data? is an open source project that aims to make it easier for Canadians to answer key questions about who owns — and what options we have to control — data collected about us, via common online (eg. social media platforms) and offline (eg. health records) activities. Without this shared understanding, it’s hard to have informed discussions and make decisions about the way we actually want ownership and control of our data to work. Whose Data? helps solve this problem by putting information about who owns the data collected about Canadians in one place.
I interviewed Sam Burton to learn more about Whose Data? and how you can help at the Mozilla’s Global Sprint 2018.
What is Whose Data?
Whose Data? is an open source project that aims to make it easier for Canadians to answer key questions about who owns — and what options we have to control — data collected about us.
The first goal is to build a database that lists organizations that commonly collect data about Canadians, including both online (eg. social media platforms) and offline (eg. the healthcare system) actors, and provides answers to two questions about each one: do I legally own the data this organization has about me? and can I see all the data they have about me, for free?
Why did you start Whose Data?
I live in Toronto, and last year discussions were heating up about the partnership between Sidewalk Labs (owned by Alphabet, Google’s parent company) and Waterfront Toronto to develop a “neighborhood built from the internet up”.
Many people had important questions about privacy, data ownership, and control — questions like who will own/control/have access to the data that is captured by the sensors deployed in this project?
But a different question was distracting me. This whole conversation made me wonder: who owns, controls, and has access to my data right now? I felt like I couldn’t have a full discussion about what I wanted from Sidewalk Labs or the City before I knew understood the status quo, and had an opinion about it.
I did some digging, and I quickly discovered there’s no short answer.
So I started Whose Data? both as a motivation for myself to dig deeper, and with the hope that making this information easier to access will help bring more Canadians into the discussion.
The urgency grew when news about Cambridge Analytica misusing personal data from Facebook hit the mainstream media early this year, and more people started asking questions about how information about us is collected, shared, and used.
How possible is it to live in a city like Toronto and not have any data collected about you on a daily basis?
I think it’s very difficult today. Even if I didn’t have a smartphone, data is created every time I buy something with a debit or credit card. If I pay with cash, but collect points through Air Miles or Shoppers Optimum, that data is saved. If I take public transit using Toronto’s new Presto card, an electronic payment system linked to a personal account, this creates a record of everywhere I travel. Whenever I see a doctor, pay a phone bill, or walk into a store that has a camera — data is collected about me.
But this is not necessarily a bad thing.
Right now, especially in the wake of the Cambridge Analytica/Facebook scandal, I think we’re in a moment of hyper awareness and fear about personal data collection. I think this is fair, because our trust has been broken. And not only by Facebook. There are other actors, many not in the headlines, that abuse our data and our trust.
But we also need to remember that when personal data is collected, shared, and used in a way that is clear to us, provides value to us and our communities, puts our privacy first, and has our full, informed consent, it can be of great benefit.
If a Presto account means I can ride the streetcar without worrying about throwing away $146.25 if my Metropass falls out of my pocket, that sounds like a good idea to me.
If an app can help me avoid spending an extra hour in a traffic jam and give me more time to spend with my favourite people and activities, I’m in (as much as I love podcasts, they can’t put sitting in traffic on that list).
If a healthcare system can use electronic records to enable the rapid, secure transfer of patient data that can improve the quality of care, I say let’s do it.
What we need is to do is to ensure that our personal data is collected, used, and shared in a way that puts us, our privacy, and our right to choose first. Unfortunately, that’s not typically the case today. That means things have to change. And in order to know what things need to change — and then to make that change happen — we need to understand the current landscape.
How do you start a conversation with someone who hasn’t thought about data collection before?
I usually start with why I care about data collection:
I don’t feel comfortable with anyone knowing where I live and where I go every day. I’ve made the choice to trust some government agencies and companies with my personal data, but I don’t feel completely clear on how they’re using it or who they’re sharing it with. I worry about having my credit card information stolen or getting doxxed.
I also know that data brokers are mining personal data about me — and millions of others — without my permission, and selling it for huge profit. This data is being used to create ‘e-scores’ about each of us: unregulated and often inaccurate attempts to predict our behaviour. E-scores are increasingly being used in ways that companies are not allowed to use credit scores, from informing what product to advertise to deciding who to hire. I find these practices dishonest and unfair.
If you want to start a conversation with someone who hasn’t really thought about personal data collection before, I suggest thinking about this same question: why is this something that matters to you? Are you creeped out by ads you find just a little too relevant? Did you look at your Google search history and were surprised discover a record of every search you’ve done since 2003? Did you get charged an exorbitant fee to access your health records?
Often, I find the person I’m talking to has had an experience along the same lines and the conversation goes forward from there.
What information have you found that surprised you?
It really surprised me that in Canada we have the right to request access to any video footage of us — on both public or private property. In a later stage of this project, I’d like to put some of these rules to the test by requesting information. I’m hoping this is something others will want to help with!
What challenges have you faced working on this project?
A lot of this information is buried in lengthy text and vague, confusing language. It needs a lot of verification before I’m confident it’s accurate — including contacting the organizations directly and looking for policy or legal experts to review. How to best verify the information Whose Data? shares is the biggest content-related piece I’m still trying to figure out.
What kind of skills do I need to help you?
We need people like you to help grow and improve! If you want it to help make it easier for Canadians to find out who owns our data, there’s something you can do to contribute.
To find out more, check out the Contributors Guidelines — whether you have one hour right now or several hours a month, there’s something you can do to help move Whose Data? forward!
In terms of specialized skills, there are several technical and design improvements I’d really appreciate a hand with. And if you are a policy or legal expert in this field, it would be wonderful if you could help provide expert reviews.
How can others join your project at #mozsprint 2018?
Keep your eyes on the Whose Data? Contributors Guidelines! I’ll be updating them with specific opportunities to get involved during the 2018 Global Sprint.
What meme or gif best represents your project?
Join us wherever you are May 10–11 at Mozilla’s Global Sprint to work on many amazing open projects! Join a diverse network of scientists, educators, artists, engineers and others in person and online to hack and build projects for a health Internet. Register today
This post by Chad Sansing is licensed under a Creative Commons Attribution 4.0 International License.
