Ethics in the History of Medical Informatics for Decision-Making: Early Challenges to Digital Health Goals.

Abstract

Inclusive digital health prioritizes public engagement through digital literacies and internet/web connectivity for advancing and scaling healthcare equitably by informatics technologies. This is badly needed, largely desirable and uncontroversial. However, historically, medical and healthcare practices and their informatics processes assume that individual clinical encounters between practitioners and patients are the indispensable foundation of clinical practice. This assumption has been dramatically challenged by expansion of digital technologies, their interconnectable mobility, virtuality, surveillance informatics, and the vastness of data repositories for individuals and populations that enable and support them. This article is a brief historical commentary emphasizing critical ethical issues about decisions in clinical interactions or encounters raised in the early days of the field. These questions, raised eloquently by François Grémy in 1985, have become urgently relevant to the equity/fairness, inclusivity and unbiasedness desired of today's pervasive digital health systems. The main goal of this article is to highlight how the personal freedoms of choice, values, and responsibilities arising in relationships between physicians and healthcare practitioners and their patients in the clinical encounter can be distorted by digital health technologies which focus more on efficiency, productivity, and scalability of healthcare processes. Understanding the promise and limitations of early and current decision-support systems and the analytics of community or population data can help place into historical context the often exaggerated claims made today about Artificial Intelligence and Machine Learning "solving" clinical problems with algorithms and data, downplaying the role of the clinical judgments and responsibilities inherent in personal clinical encounters. A review of selected early articles in medical informatics is related to current literature on the ethical issues and technological inadequacies involved in the design and implementation of clinical systems for decision-making. Early insights and cautions about the development of decision support technologies raised questions about the ethical responsibilities in clinical encounters where freedom of personal choice can be so easily limited through the constraints from information processing and reliance on prior expertise frequently driven more by administrative rather than clinical objectives. These anticipated many of the deeper ethical problems that have arisen since then in clinical informatics. Early papers on ethics in clinical decision-making provide prescient commentary on the dangers of not taking into account the complexities of individual human decision making in clinical encounters. These include the excessive reliance on data and experts, and oversimplified models of human reasoning, all of which persist and have become amplified today as urgent questions about how inclusivity, equity, and bias are handled in practical systems where ethical responsibilities of individuals patients and practitioners intertwine with those of groups within professional or other communities, and are central to how clinical encounters evolve in our digital health future.