Yearbook of Medical Informatics: Ethics in Health Informatics

Contemporary bioethics was fledged and is sustained by challenges posed by new technologies. These technologies have affected many lives. Yet health informatics affects more lives than any of them. The challenges include the development and the appropriate uses and users of machine learning software, the balancing of privacy rights against the needs of public health and clinical practice in a time of Big Data analytics, whether and how to use this technology, and the role of ethics and standards in health policy.

Historical antecedents in statistics and evidence-based practice foreshadow some of the difficulties now faced, but the scope and scale of these challenges requires that ethics, too, be brought to scale in parallel, especially given the size of contemporary data sets and the processing power of new computers. Fortunately, applied ethics affords a variety of tools to help identify and rank applicable values, support best practices, and contribute to standards. The bioethics community can in partnership with the informatics community arrive at policies that promote the health sciences while reaffirming the many and varied rights that patients expect will be honored.

Introduction

Ethics is a kind of lens we use to identify issues and a lever used to formulate and motivate best practices. Applied ethics is a tool to employ widely shared if not universal values to contemporary questions and challenges in science and the professions. Bioethics is the branch of applied ethics that addresses issues in the health professions; it is often linked to other kinds of applied ethics, including business ethics, computer ethics, government ethics, and so on.

It has become commonplace to observe or argue that science usually or even always outpaces, or advances, more swiftly than applied ethics. In the case ofhealth informatics, this is a mistake. For some four decades, albeit with some exceptions, advances in biomedical informatics have been matched step for step by scholars who have identified and addressed the ethical, legal, and social issues (ELSI) raised by the expansion of a new science. This acronym, borrowed from the Human Genome Project, has ably served the informatics community as a label or guidepost for research and pedagogy.

Though bioethics has moved forward, the same cannot be said for the law which continues to lag as a source of official governance and oversight in health informatics and other domains. It might be that the relationship between ethics and public policy represents the greatest challenge faced by health informatics and the society health informaticians seek to serve.

What follows from these two observations is this: we have an extraordinary opportunity at a crucial time to try to ensure that the insights and analyses provided by ethics continue to mature and, as important, that they are taken up and incorporated by academic and health care institutions, businesses, professional organizations, and governments.

In what follows, I expand on these points by filtering them through a number of contemporary challenges. These include artificial intelligence and machine learning; Big Data, data sharing and privacy; duties to use and manage new technology; and ethics and public policy.