Kenneth W. Goodman

Chips, tags and scanners: Ethical challenges for radio frequency identification

Radio Frequency Identification (RFID) systems identify and track objects, animals and, in principle, people. The ability to gather information obtained by tracking consumer goods, government documents, monetary transactions and human beings raises a number of interesting and important privacy issues. Moreover, RFID systems pose an ensemble of other ethical challenges related to appropriate uses and users of such systems. This paper reviews a number of RFID applications with the intention of identifying the technology’s benefits and possible misuses. We offer an overview and discussion of the most important ethical issues concerning RFID, and describes and examine some methods of protecting privacy.

Ethical, legal and social issues for personal health records and applications

Robert Wood Johnson Foundations Project HealthDesign included funding of an ethical, legal and social issues (ELSI) team, to serve in an advisory capacity to the nine design projects. In that capacity, the authors had the opportunity to analyze the personal health record (PHR) and personal health application (PHA) implementations for recurring themes. PHRs and PHAs invert the long-standing paradigm of health care institutions as the authoritative data-holders and data-processors in the system. With PHRs and PHAs, the individual is the center of his or her own health data universe, a position that brings new benefits but also entails new responsibilities for patients and other parties in the health information infrastructure. Implications for law, policy and practice follow from this shift. This article summarizes the issues raised by the first phase of Project HealthDesign projects, categorizing them into four topics: privacy and confidentiality, data security, decision support, and HIPAA and related legal-regulatory requirements. Discussion and resolution of these issues will be critical to successful PHR/PHA implementations in the years to come.

Ethics, Computing, and Medicine: Informatics and the Transformation of Health Care

From the Publisher: As those in medicine increasingly depend on computers and other intelligent machines, the intersection of ethics, computing and the health professions grows much more complex and significant. This book attempts to systematically identify and address the full range of ethical issues that arise when intelligent machines are used in medicine, nursing, psychology, and allied health professions. It is appropriate for professionals and students in the fields of bioethics and medical informatics.

Ethics, information technology, and public health: new challenges for the clinician-patient relationship.

Increasingly widespread adoption of health information technology tools in clinical care increases interest in ethical and legal issues related to the use of these tools for public health and the effects of these uses on the clinician-patient relationship. It is argued that patients, clinicians, and society have generally uncontroversial duties to support civil societys public health mission, information technology supports this mission, and the effects of automated and computerized public health surveillance are likely to have little if any effect on the clinician-patient relationship. It is also suggested, nevertheless, that electronic public health surveillance raises interesting and important ethical issues, some of which can be addressed if not resolved by empirical research, especially regarding patient preferences about secondary use of health data and their moral obligation to contribute to population- based health.

Ethics, genomics, and information retrieval

The union of genomics and computational information retrieval raises a number of ethical issues, including data sharing, database accuracy, group and subgroup stigma, and privacy and confidentiality. These issues are introduced and assigned a preliminary analysis which, it is hoped, may be of use in more sustained efforts to identify issues, solutions and potential guidelines, to stimulate education, and to strike the most appropriate balance between the rights of individuals and the needs of researchers and society.

Precision medicine ethics: selected issues and developments in next-generation sequencing, clinical oncology, and ethics.

Purpose of review In early 2015 the National Institutes of Health launched a new, national Precision Medicine Initiative with the primary goal of rapidly improving the prevention, diagnosis, and treatment of cancers. The first-stage emphasis on oncology presents unique opportunities for clinical oncology to influence how the ethical challenges of precision medicine are to be articulated and addressed. Thus, a review of recent developments in connection with the Initiative, in particular on core ethics issues in clinical genomics, is a useful starting point. Recent findings Unique ethical issues arise in precision medicine because of the enormous amounts of data generated by clinical whole-genome or whole-exome sequencing and the extent of current uncertainties with respect to data interpretations and disease associations. Among the most ethically challenging issues for clinicians are complicated informed consent processes, returning results – particularly secondary and incidental findings–and privacy and confidentiality. Summary The first tests of precision medicine ethics in practice will be in clinical oncology, providing a rare opportunity to shape the agenda and integrate practical ethics considerations. These efforts can benefit from pre-existing research ethics analyses and recommendations from clinical and translational genetics research.

AMIA's code of professional and ethical conduct

AMIA, as other professional societies, has a long-standing interest in promoting a strong ethical framework for its membership. This white paper presents the latest AMIA Code of Professional and Ethical Conduct. It was approved in November of 2011 by the AMIA Board of Directors. This document constitutes a revision of, and update to, the first code, approved and published in J Am Med Inform Assoc 1 in 2007. In an effort to keep pace with the fields vitality, the code presented here is intended to be a dynamic document, and will continue to evolve as AMIA and the field itself evolve. AMIA will publish on its web site this version of the code as part of a process that seeks ongoing response from, and involvement by, AMIA members. The code is meant to be practical and easily understood, so it is compact and uses general language. Unlike the ethics codes of some professional societies, the AMIA code is not intended to be prescriptive or legislative; it is aspirational, and as such, provides the broad strokes of a set of important ethical principles especially pertinent to the field of biomedical and health informatics. The code is organized around the common roles of AMIA members and the constituents they serve—including patients, students, and others—and with whom they interact. The AMIA Board and the AMIA Ethics Committee encourage members to offer suggestions for improvements and other changes. In this way, the code will continue to progress and best serve AMIA and the larger informatics community. Codes of ethics for professionals present special challenges in conception and execution. The goal of this code is to lay out the core values of this profession in a way that inspires AMIA members to acknowledge and embrace these values. While the crafting of the code involved many …

Bioethics, Business Ethics, and Science: Bioinformatics and the Future of Healthcare

The intersection of ethics, computing, and genetics plots a space not yet adequately mapped, despite its importance, indeed, its rapidly growing importance. Its subdomains are well-enough known: “Genethics,” or the study of ethical issues in genetics and genomics, is part of core curricula everywhere. Ethics and computing is an established subfield. Computing and genetics—bioinformatics—has in little more than a decade progressed from subsubspecialty to the sine qua non of contemporary biomedical research, and it bids fair to transform clinical practice. We must prepare for the complete digitization of the genomes of individual patients and the storage of millions of these genomes in very large databases.

Findings from the American College of Epidemiology’s Survey on Ethics Guidelines

PURPOSE A survey to establish both the need and subject areas for a possible new set of ethics guidelines for epidemiologists was conducted among a random sample of 300 North American (Canada, Mexico, and United States) members of three major United States-based professional epidemiology organizations. METHODS An 88% response rate revealed wide agreement on topics to be included in any new set of guidelines, but uncertainty prevailed about the need for new guidelines; 41% agreed that there was a need to develop a new set, 43% had no opinion, and 16% disagreed. RESULTS There was almost no difference in preferences between men and women for topics to be included in a new set of guidelines, or between those aware or unaware of extant ethics guidelines in epidemiology. Fifty-four percent were aware of such guidelines and only 29% of these said they could describe the content of the guidelines. CONCLUSION More needs to be done to evaluate the utility of ethics codes in epidemiology.

Ethical implications of modifying lethal injection protocols

Teresa Zimmers and colleagues argue that it is difficult to conceive how lethal injection research activities could be carried out in a fashion consistent with ethical norms.