Citizenship in the age of data collection
When using an app and scrolling the web, how often are you bombarded with a pop-up vaguely describing language how your personal data will be collected and used? Rather than thinking through the possible implications of what we’re agreeing to, we often quickly and reflexively hit “I accept” in order to continue shopping, reading, chatting, and more, undisturbed. This seemingly never-ending stream of consent and opt-out requests have, for many of us, led to special kind of numbness when online.
On the flip side, many of us have become increasingly wary of the increasing role technology plays in our lives. This has led to mounting skepticism and concerns about how, when, with whom, and under what conditions companies and governments should share and store personal information. A combination of concern and fatigue, this complicated dynamic has created a cognitive stalemate: we recognize there’s a problem that needs to be addressed, but aren’t entirely clear about what there is to debate when it comes to personal data.
Technology, data, and democracy
As an official knowledge partner at the New York Times Athens Democracy Forum, we’ll lead a breakout session exploring howtechnology is changing the way we experience democracy.
Collection of our personal data is changing the way we experience democracy, including many citizens asking for more accountability and transparency. For instance, the UK has witnessed a growing discussion around the concept of “reasonable expectations” which would require the government to communicate to citizens about data use, to engage in an honest and ongoing conversation, and to respect their privacy and choices.
How can we help people navigate the complicated ideas around data collection and personal rights? Enter Citizens Juries. We’ve seen that given the resources, time, and knowledge to explore the concepts of data collection, citizens are capable of not only understanding the issue, but creating recommendations for a society where technology can continue to serve the needs of the people.
Citizens navigate data decisions
In the United Kingdom, we partnered with the Health e-Research Center (HeRC), NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre, the Information Commissioner’s Office, the Farr Institute of Health Informatics Research, and the Health Research Authority to conduct a Citizens Jury and understand the public’s contrasting priorities when considering privacy and better health outcomes. Over the course of the Jury, which we ran in partnership with Citizens Juries c.i.c. many participants changed their opinion about who their data should be shared with, allowing for wider information sharing — particularly when the research or commercial application demonstrated a clearly defined and measurable public benefit. Jurors also discussed who should get access to patient records, with more participants voting for wider data sharing at the conclusion of the jury.
We’ve also partnered with researches from the University of Massachusetts Medical School (UMMS) Eunice Kennedy Shriver Center to conduct a Citizens Jury to exploring the utility and ethical considerations relating to the creation of a database that tracks diagnosis, treatment, services, and outcomes of individuals with autism. This kind of database could improve the coordination of care and easily convey important health information. But many people were concerned about weighing the public benefit versus the privacy of people who would be included in the database, who could face possible stigma.
Towards the future
We’re looking forward to 2019, when we’ll explore patient perspectives on the ethical, regulatory, and legal issues surrounding the use of Artificial Intelligence (AI) and machine learning for analyzing patient data.
How have you seen technology changing the nature of politics, democracy, and citizenship? Share your thoughts during our #DemocracyChat on Twitter next Monday from 11am — 1pm CT!
