Smartphone crowdsourced medical data for biomedical research: Addressing the ethical, legal and health policy concerns

Smartphone applications for health are being increasingly used as a platform for collecting and sharing large volumes of crowdsourced personal health data for biomedical research and algorithm training. Consumer genetics products are similarly allowing individuals to have direct access to their own genetic data and to share such data with researchers. Using smartphone and genetic data in these ways presents numerous opportunities to expand biomedical knowledge, though it also raises certain risks. Some of these include risks to personal privacy and risks associated with unclear ethical and legal obligations on the part of app developers and researchers. In this project, we aim to mitigate these risks by determining how smartphone applications and other mobile tools that collect health data work in practice and by addressing legal, ethical, and regulatory uncertainty, comparing the situation as it exists in Canada and Belgium. We will use this evidence to develop health policy guidelines that will enable smartphone data to be used safely, in a manner that protects users and the public. In doing so, we will assure that such data will contribute to improved health outcomes by expanding biomedical knowledge and making health more effective and efficient.