The Human Project has an ambitious goal: recruiting 10,000 New Yorkers to help solve our community’s biggest challenges by sharing the bits of information they create from moment to moment, every day. The study has the potential to make groundbreaking discoveries that extend and improve lives — from preventing diabetes and asthma to improving schools and relieving financial stress.
The opportunity to be part of such a pioneering research initiative is inspiring, but it is not without risk. The study directors are committed to being leaders in the ethical conduct of big data research. They will never sell or give away participants’ personal data. No researcher, government entity, or company can take a participant’s personal information. And they are taking unprecedented steps to be transparent about potential risks to participants. While protecting participants’ data and privacy is the study’s top priority, part of that protection extends to making sure that participants know exactly what they are signing up to do when they agree to join the study.
To achieve that goal, I led scriptwriting and development for an innovative online consent system that translates complex legal forms into engaging animated videos with simple language and interactive quizzes to facilitate understanding. Unlike the dense agreements consumers routinely skip reading when turning their lives over to Mark Zuckerberg and Tim Cook, each video is written at a sixth-grade comprehension level, with adaptations geared to teens and younger children aged 7-12. Whether providing a general study overview or walking participants through data risks and security protections, the videos ensure that participants are truly informed and comfortable with everything that study participation entails. Each video also reminds participants how the data they are sharing may help to build a build a better New York for everyone.
In the video below, for example, we go over the specific types of data that will be collected using the study’s smartphone application. The video reassures participants that we won’t be looking at the content of their emails and social media posts, or know which websites they visit when online. Rather, we’re interested in understanding their digital “habits” — the amount of time they spend visiting websites or how often they engage with friends and family through text messaging.