Symposium on Digital Mega-studies
The technology of the modern world is developing exponentially every year, and with it comes the ability to conduct health research of unprecedented scale and scope. The kind of data we collect, how we collect it, how we store it and what we use it for has been absolutely revolutionised by the rise of the digital era.
The potential to collate an entire population’s physiological, medical, academic etc. records holds a wealth of untapped benefits in terms of identifying trends and relationships between lifestyle and health issues. However, this is countered by the sensitivity of the data involved and the threat a database such as this may pose to that population. So, when discussing the implications of a “digital mega-study”, the crucial question we must ask ourselves is “what kind of world do we want to create?”
On Tuesday 2 April, representatives from OVIC’s Youth Advisory Group (YAG) were invited to present a youth perspective on digital mega-studies at a one-day symposium conducted by the Health, Law and Emerging Technologies (HeLEX) research team at Melbourne Law School. The purpose: to bring together leaders across the research, digital, consumer, legal and policy spheres to consider the unique challenges and concerns that arise in light of digitised, large-scale longitudinal studies, and thus contribute to developing effective governance strategies.
The general consensus amongst the YAG was that the concept of privacy has evolved through the generations. While privacy may have once been considered the act of keeping information about yourself to yourself, our generation is the first to have grown up in a truly globalised society and as such, we value our privacy differently. We’ve accepted the inevitability of having a digital footprint, so the idea of posting a photo on a platform for the “whole wide world to see” doesn’t necessarily scare us that much – instead, many of our concerns stem from control. We do want to protect our right to control what information we put out there, and what is done with that information.
There is also a growing understanding about the impact of sharing personal information online and how this can affect our futures – it is now common knowledge amongst many teens that companies may look at your online presence when considering employment. In the context of digital mega-studies that may collect data about a cohort from birth, the possibility of not just employers, but educational institutions, insurance companies, banks and more being able to access one’s entire profile raises profound, GATTACA-esque concerns about engendering discrimination.
The event itself consisted of hearing from several presenters of different professional backgrounds, as well as participating in multiple Q&As and lively brainstorm sessions. The ethical and logistical complexities surrounding digital mega-studies, including but not limited to the psychological effect it may have on a young participant, the accuracy of the data, the concept of dynamic consent and how to build a relationship of trust between participant and researcher were discussed at the conference from diverse perspectives in the hopes that the framework for future policies surrounding such studies will be better informed, robust and sustainable.
In an age where physical and online spaces become increasingly intertwined, the conversation about privacy and digital data collection was both relevant and thought-provoking. On behalf of the YAG, I would like to thank the team at HeLEX for inviting us to participate in such a wonderful event. It was incredibly refreshing and much appreciated to be invited as a young person “to the table”, so to speak, and to feel that our perspectives have been valued as a contribution.
This article was written by Jacqueline Du, member of OVIC’s Youth Advisory Group. The views expressed in this post are the author’s own and do not necessarily reflect the views of OVIC.