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Rethinking Privacy and Consent Tools

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Do you know what you just signed?

When was the last time you actually read a privacy notice or one of those cookie warnings while browsing the internet? You might only read them if you have a few minutes to spare. Or perhaps you have read a few over time and figure they’re all the same, so you don’t bother anymore.  As a data professional myself, I admittedly don’t always read them for those very reasons.

The privacy and consent information provided by online resources (including Netflix or any streaming service) can be more than a little overwhelming. Some sites provide plain language options, but the content is so alarming it can feel easier to breeze through and click “accept.” Take, for example, Meta (formerly known as Facebook) which freely admits to collecting everything ‘you and others do and provide’ on the Facebook app. If you knew that’s what it said, would you still consent? Perhaps, but at least you’d do so with full knowledge.

Our collective lack of willingness to spend time reading these privacy and consent details during our daily online activities should give us clues as to how to improve our own work as data professionals.

Learning from our experiences as users

As data professionals and researchers, we know what informed consent means. We understand the value and integrity of using informed consent forms for the collection, access and storage of personal information. If a consent waiver is provided as an option, we understand the requirement for appropriate safeguards to be in place.

Yet, we often rush through (or ignore) our own rights to privacy and consent. As well, we may not always prioritize making improvements to our tools and consent processes.  Challenges range from lack of resources or time to develop better tools, to simply not understanding their true significance.  It’s often easiest to stay with what we know and use a ‘go to’ template that ticks all the boxes for privacy and ethics review.

It’s time to rethink our privacy and consent tools

As we lobby for increasing access to personal and personal health information, we need to also advocate for creative and adaptable privacy and consent solutions to complement our need for data.

We need to identify consent solutions that will be adaptable and robust, and that will evolve alongside the growing capacity for data collection, access, and storage.

Responsive privacy and consent solutions will contribute towards the development of stronger data sets, improved inclusion and equality of participants, the ability to navigate layers of legislative authority, and address the challenges faced by multi-region research.

What we can do

As data professionals, we need to take our knowledge and ethical responsibility of proper informed consent into our day-to-day activities. What better way to build strong privacy and consent tools then to become proficient users of them? As with developing any skill, we have to practice.  For example, math homework (hopefully) helps to improve a student’s math skills. Similarly, the ability to create clear informed privacy and consent text will come with practice, exposure and repetition.

What we can do:

  • Take our own consenting seriously by reading what we are agreeing to and challenge it if necessary
  • Practice plain language writing and communicate clearly and update our templates as needed
  • Ask others about their privacy and consent practices and solutions and learn from their experiences
  • Start the conversation about alternate formats of privacy and consent tools and talk to privacy experts and REBs about potential solutions

The more discerning we are about our own privacy and consent, the more likely we can identify tangible privacy and consent solutions that can adapt to the ever-evolving use of data for research.

Additional reading:

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