Around the world, youth face pressing challenges. Conflicts, the climate crisis, education and employment gaps, structural inequities, and the lingering effects of COVID-19 all have an effect on the health and wellbeing of the world’s 1.2 billion adolescents. Already existing, siloed datasets from governments, international organizations, and companies might be reused to mitigate the consequences of these challenges.
Yet, young people often do not have a clear way to make their voice heard in decisions that directly affect them, now and in the years to come. This is particularly true when it comes to questions about data use where information for and about children may be used or shared by a variety of organizations without their knowledge or consent.
Young people often have little say in what data is shared about them, when it is shared, under what conditions, and with whom. Even when it is done by organizations who have their interests in mind, young people are excluded from conversations, which can lead to a lifelong loss of trust, a failure to consider their innate rights, and reduce their agency.
In March 2023, The Lancet Commission on Adolescent Health and Well-Being, UNICEF, and The GovLab at NYU joined together to understand what youth would like to see regarding data (re)use. Through six virtual studio workshops or “Youth Solutions Labs”, we hosted over 123 youth between the ages of 16 and 20 from around the world to hear about what solutions they thought could address issues affecting them and the role of data in addressing those issues.
We learned not only valuable lessons about what might constitute a global agenda for youth health and well-being but also ways to responsibly use data for and about youth in ways aligned with global frameworks such as the Responsible Data for Children principles.
Responsible Data for Children
Responsible Data for Children is a framework and initiative for assessing risks and opportunities for advancing children’s rights through data and across the data lifecycle, grounded in a set of principles for responsible data handling. It recognizes that children face unique vulnerabilities that can be best addressed by spotting the particular risks and opportunities in the contexts that children reside in.
Core to the effort is a recognition that data moves through distinct stages from collection to use to impact and that a flexible framework that centers youth and children is essential. As such, it identifies several principles to emphasize throughout a data-driven effort—being participatory, professionally accountable, people-centric, preventative of harms across the data lifecycle, proportional, protective of children’s rights, and purpose-driven.
Responsible data practices
These principles proved relevant throughout the Labs as participants discussed the ways that they thought data should be used to address the challenges they identified.
They spoke on what young people were comfortable with organizations reusing, how they thought that data should be used, who should gain access to it, and when. The resulting discussions revealed an immense amount of information about the ways youth see data about young people and the importance of principle-led frameworks.
When it came to the kinds of data used (or reused for purposes other than initially collected), youth suggested that experts rely on many different kinds of data—from search and social media trends to hospital records to location data. They expressed the importance of including surveys, interviews, and other direct methods to learn from a diverse range of lived realities.
Most participants were only comfortable so long as the data re-use for or about youth aimed to solve public problems and was de-identified. Consistent with the Responsible Data for Children principle of being proportional and purpose-led, they wanted data collection and retention aligned with an intended purpose with outcomes that could improve their lives.
Note: The Youth Solutions Labs included participants from North America and Western Europe (26), Latin America and The Caribbean (20), Asia-Pacific (22), Middle East and North Africa (19), Sub-Saharan Africa (16), and Eastern Europe and Central Asia (20).
Similarly, many participant groups suggested providing the public sector and trusted intermediaries access to de-identified data about or for youth. Many young people viewed research centers and policymakers as uniquely accountable. Many youth saw avenues to express concerns and hold people responsible when they served in public-facing bodies.
Youth participants also had other views on what ethical and responsible data reuse entails. Some spoke on the need for informed consent while others emphasized the need to account for inequities. Still others spoke about the need to reflect the local context and culture. Groups were divided on whether data re-use should be done only in a crisis or every day to prevent today’s problems from turning into crises.
Reflecting on these perspectives and ensuring the needs and expectations of youth are met can be critical when it comes to being people-centric.
Overall, the Youth Solutions Labs reveal several key lessons.
First, they demonstrate a need for new processes and engagements to increase youth participation in discussions around defining ethical and responsible data re-use.
Second, there is an opportunity to explore new data types and sources that could be re-used to accelerate youth health and wellbeing—beyond data about youth themselves.
Finally, there is a need to increase institutional trust to address concerns about the re-use of data by different actors. Principle-led frameworks like Responsible Data for Children can be a valuable resource here in ensuring that practices keep in mind the people at the center of data—children and youth themselves.
We’ll reflect on these and other takeaways in the 2024 Lancet Commission Report on Adolescent Health and Wellbeing, which we’ll publish in the coming weeks. In the meantime, if this work interests you, we encourage you to email firstname.lastname@example.org for more information on the Youth Solutions Labs and opportunities to participate in future initiatives. Reach out to email@example.com for information on the Responsible Data for Children initiative.
Francisco Benavides, UNICEF Uruguay Country Representative, and Stefaan G. Verhulst, Co-Founder and Chief Research and Development Officer of The GovLab, discussed the Youth Solutions Labs at the Youth takeover plenary at Festival de Datos. Watch the replay; the session begins at 31 minutes, 54 seconds: