IMIA Yearbook of Medical Informatics 2020
© 2020 IMIA and Georg Thieme Verlag KG
Ethics in Health Informatics
Kenneth W. Goodman
Institute for Bioethics and Health Policy, University of Miami Miller School of Medicine, Miami, USA
Summary
Contemporary bioethics was fledged and is sustained by chal-
lenges 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.
Keywords
Artificial Intelligence, Big Data, Bioethics, Clinical Decision
Support Systems, Public Policy
Yearb Med Inform 2020
http://dx.doi.org/10.1055/s-0040-1701966
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 univer-
sal 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 of health informat-
ics, 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 gov-
ernance and oversight in health informatics
and other domains. It might be that the re-
lationship 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 obser-
vations 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.
1 Artificial Intelligence,
Machine Learning, and Ethics
The ancient fantasy of an intelligent ma-
chine or a smart homunculus became a
research project in the 17
th
century when
Gottfried Leibniz, the philosopher and
logician who, with Newton, discovered
the infinitesimal calculus, suggested that
human reason could be rendered in a uni-
versal language such that argumentation
could be reduced to calculation. He built a
primitive calculator [1], arguably the first
machine to replicate an aspect of human
thinking. Leibniz thought that intelligent
machines would formalize reason and end
disagreements. They did not. During the
greatest disagreement in the history of
civilization – World War II – code-breaking
machines represented nontrivial instantia-
tions of Leibniz’ aspiration: “The first digi-
tal, electronic and programmable computer
was developed as an instrument of warcraft.
The Colossus was a room-sized collection
of racks, pulleys, wires and some 2,400
bottle-sized vacuum tubes built at Britain’s
Bletchley Park to decipher encrypted Ger-
man messages…. It became operational in
1944 and was used to prepare the D-Day
invasion of Normandy. One could argue
that it eventually saved more lives than most
medical inventions” [2].
However, we want health informatics to
save and improve lives, to reduce suffering,
to help to achieve the larger goals of the
Published online: 2020-04-17