Sharing is caring – or is it? Smartphone boom prompts healthcare questions
McGill researchers to team up with Belgian and UdeM colleagues to explore ethical and legal issues associated with data sharing via mobile apps
Modern life, it seems, is marked by an unprecedented propensity to dramatic and rapid change. This tendency is perhaps best symbolized by the ubiquitous smartphone. What seemed like just some cool technology a few years ago has quickly become an absolutely essential tool for everyday living. Worldwide, almost 4 billion people have at least one such device. In Canada, the rate of smartphone ownership is 88%, as of 2018.
Along with the ubiquity of smartphones is their ability to share data instantaneously with other users. In particular, there has been an explosion in the development of healthcare-related apps for smartphones; in 2019, over 350,000 healthcare apps were available for either Apple or Android phone users. Healthcare apps are also increasingly being used for health research, to recruit participants, collect data, and make new discoveries about human health. And while crowdsourced personal health data creates an unprecedented opportunity to increase biomedical knowledge, it also presents many risks.
Risks include the loss of privacy and the fact that much of the data collected in this manner is done so with little transparency. The lack of clear legal and ethical frameworks on the matter can only exacerbate this situation. With more than half of all smartphone users collecting some kind of health data on their phones, there is a need to understand the ramifications of this widespread sharing, how it can impact users, and how these risks can be mitigated through effective policy.
To examine this issue, a team of researchers from Quebec and Belgium have received a total of $700,000 in funding from the Fonds de Recherche du Québec (FRQ) and the Research Foundation – Flanders (FWO). The project is led by Ma’n H Zawati (McGill University, Quebec) and Mahsa Shabani (Ghent University, Belgium) with Vincent Gautrais (Université de Montréal, Quebec) and Pascal Borry (University of Leuven, Belgium) as co-investigators.
“This project will develop new knowledge and tools,” explained Professor Ma’n H. Zawati, Assistant Professor, Human Genetics Department, McGill University and the Executive Director of the Centre of Genomics and Policy. “It will help provide empirical data on the ways smartphones are being used for research and algorithm training and develop much needed anticipatory and prospective policies on the matter”.
“The collection of sensitive health data directly from individuals raises questions about compatibility with applicable data protection regulations,” said Professor Mahsa Shabani, Faculty of Law and Criminology, Ghent University. “This project has provided us with a unique opportunity to study and compare the relevant regulations in Belgium, the European Union, and Canada, and to develop recommendations for responsible use of data for research purposes.”
The project will have four distinct phases: 1) identification and categorization of smartphone apps in EU/North America, 2) interviews with researchers and developers in the sector, 3) analysis of Canadian and EU regulatory frameworks, and 4) development of policy recommendations. Phase one is already underway, and the team plans to complete the project by the end of 2023.