Data Ethics in Digital Health and Genomics

Abstract

The digital revolution has disruptively reshaped the way health services are provided and how research is conducted. This transformation has produced novel ethical challenges. The digitalization of health records, bioinformatics, molecular medicine, wearable biomedical technologies, biotechnology, and synthetic biology has created new biological data niches. How these data are shared, stored, distributed, and analyzed has created ethical problems regarding privacy, trust, accountability, fairness, and justice. This study investigates issues related to data-sharing permissions, fairness in secondary data distribution, and commercial and political conflicts of interest among individuals, companies, and states. In conclusion, establishing an agency to act as deputy trustee on behalf of individuals is recommended to intermediate the complex nature of informed consent. Focusing on decentralized digital technologies is recommended in order to catalyze the utilization of data and prevent discrimination without circulating data unnecessarily.