Confidentiality of health information is increasingly relevant in the era of electronic medical records. We discuss the case of a hospitalized patient who requested a neurology consultation for an episode he described as an “LSD-like” (Lysergic acid diethylamide) flashback. The patient expressed concern that the episode was a residual effect of past drug use, but subsequently requested that his drug use not be documented. Involved in a custody battle, he feared that if his records were released to the court he (...) could lose custody of his children. Ethical concerns arose with regards to the physician’s competing obligations with a duty to record information accurately and honestly, respect patient autonomy, and maintain patient confidentiality. We discuss the decision of the team to document the patient’s drug use by arguing that the obligation to maintain confidentiality did not supersede the primary role of the medical record as a complete and accurate account, which cannot be altered at a patient’s behest. (shrink)

Implementation of guidelines regarding breaches of electronic health information requires an anticipatory stance and physician and patient education regarding security and monitoring measures and methods of redress. Adopting a preventive ethics, rather than a crisis management, model may also increase physician awareness of how the information they choose to include and privilege within the health record may expose patients to added harms if not done mindfully.

The Council on Ethical and Judicial Affairs of the American Medical Association examines physicians’ professional ethical responsibility in the event that the security of patients’ electronic records is breached.

Information security can be of high moral value. It can equally be used for immoral purposes and have undesirable consequences. In this paper we suggest that critical theory can facilitate a better understanding of possible ethical issues and can provide support when finding ways of addressing them. The paper argues that critical theory has intrinsic links to ethics and that it is possible to identify concepts frequently used in critical theory to pinpoint ethical concerns. Using the example of UK electronic (...) medical records the paper demonstrates that a critical lens can highlight issues that traditional ethical theories tend to overlook. These are often linked to collective issues such as social and organisational structures, which philosophical ethics with its typical focus on the individual does not tend to emphasise. The paper suggests that this insight can help in developing ways of researching and innovating responsibly in the area of information security. (shrink)

Breaches of electronic medical records constitute a type of healthcare error, but should be considered separately from other types of errors because the national focus on the security of electronic data justifies special treatment of medical information breaches. Guidelines for protecting electronic medical records should be applied equally to paper medical records.

National electronic health record initiatives are in progress in many countries around the world but the debate about the ethical issues and how they are to be addressed remains overshadowed by other issues. The discourse to which all others are answerable is a technical discourse, even where matters of privacy and consent are concerned. Yet a focus on technical issues and a failure to think about ethics are cited as factors in the failure of the UK health record system. In (...) this paper, while the prime concern is the Australian Personally Controlled Electronic Health Record (PCEHR), the discussion is relevant to and informed by the international context. The authors draw attention to ethical and conceptual issues that have implications for the success or failure of electronic health records systems. Important ethical issues to consider as Australia moves towards a PCEHR system include: issues of equity that arise in the context of personal control, who benefits and who should pay, what are the legitimate uses of PCEHRs, and how we should implement privacy. The authors identify specific questions that need addressing. (shrink)

When information is transformed from what has traditionally been a paper-based format into digitized elements with meaning associated to them, new and intriguing discussions begin surrounding proper and improper uses of this codified and easily transmittable information. As these discussions continue, some health care providers, insurers, laboratories, pharmacies, and other healthcare stakeholders are creating and retroactively digitizing our medical information with the unambiguous endorsement of the federal government.Some argue that these enormous databases of medical information offer improved access to timely (...) information, evidence-based treatments, and complete records from which to provide care. To the extent that these claims are true, it would seem that this is a valuable asset that offers immeasurable benefit to all. Others believe this digitization to be an egregious invasion of privacy. In this article, I investigate the broad research questions of whether the public good aspect of capturing private health information outweighs individual interests and whether it is ethical to mandate participation in health information exchanges by all individuals who use the U.S. health system. (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)

This special issue of the Journal of Agricultural and Environmental Ethics presents so-called ethical tools that are developed to support systematic public deliberations about the ethical aspects of agricultural biotechnologies. This paper firstly clarifies the intended connotations of the term “ethical tools” and argues that such tools can support liberal democracies to cope with the issues that are raised by the application of genetic modification and other modern biotechnologies in agriculture and food production. The paper secondly characterizes the societal discussion (...) on agricultural biotechnology and defends the thesis that normative perspectives fuel this discussion, so one cannot come to grips with this discussion if one neglects these perspectives. The paper thirdly agrues that no such thing exists as “one” societal debate in which these issues should be discussed. There are several interwined debates, and different actors participate in different discourses. Some practical instruments are necessary in order to include the right issues in these debates. These instruments will be coined as “ethical tools,” since they are practical instruments that can be used (tools) in order to support debates and deliberative structures for a systematic engagement with ethical issues (hence, ethical tools). Finally, the paper clarifies the ethics of these ethical tools and presents the tools as discussed in the remainder of this special issue: 1) tools to include ethical issues in public consulation and involvement; 2) tools to support systematic reflection upon ethical issues in decision-making; and 3) tools to support explicit communication about values in the food chain. (shrink)

BackgroundElectronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to identify (...) the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain.MethodsTo identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology.ResultsThe medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters ‘privacy’, ‘autonomy’, ‘risk/benefit’, ‘human relationships’, and ‘responsibility’. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved.ConclusionsWhile there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns. (shrink)

A 47-year-old woman with a history of anxiety disorder is admitted to the hospital for shortness of breath. On the third day of hospitalization, she asks her physician for a copy of all documents pertaining to her care. What expectation should she have for full disclosure? Are there limits on her access to her medical records and do her physician's concerns about professional privilege matter?The virtues of transparency in medicine have been well described. As proponents of transparency, we favor patient (...) access to their medical records, but we are increasingly troubled by the ease and extent of disclosure in current practice as technology advances and... (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

In this paper we discuss the social and ethical issues that arise as a result of digitization based on six dominant technologies: Internet of Things, robotics, biometrics, persuasive technology, virtual & augmented reality, and digital platforms. We highlight the many developments in the digitizing society that appear to be at odds with six recurring themes revealing from our analysis of the scientific literature on the dominant technologies: privacy, autonomy, security, human dignity, justice, and balance of power. This study shows that (...) the new wave of digitization is putting pressure on these public values. In order to effectively shape the digital society in a socially and ethically responsible way, stakeholders need to have a clear understanding of what such issues might be. Supervision has been developed the most in the areas of privacy and data protection. For other ethical issues concerning digitization such as discrimination, autonomy, human dignity and unequal balance of power, the supervision is not as well organized. (shrink)

This paper provides a systematic literature review, analysis and discussion of methods that are proposed to practise ethics in research and innovation. Ethical considerations concerning the impacts of R&I are increasingly important, due to the quickening pace of technological innovation and the ubiquitous use of the outcomes of R&I processes in society. For this reason, several methods for practising ethics have been developed in different fields of R&I. The paper first of all presents a systematic search of academic sources that (...) present and discuss such methods. Secondly, it provides a categorisation of these methods according to three main kinds: ex ante methods, dealing with emerging technologies, intra methods, dealing with technology design, and ex post methods, dealing with ethical analysis of existing technologies. Thirdly, it discusses the methods by considering problems in the way they deal with the uncertainty of technological change, ethical technology design, the identification, analysis and resolving of ethical impacts of technologies and stakeholder participation. The results and discussion of our literature review are valuable for gaining an overview of the state of the art and serve as an outline of a future research agenda of methods for practising ethics in R&I. (shrink)

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when (...) principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest. (shrink)

Abstract:Electronic health records (EHRs) offer significant advantages over paper charts, such as ease of portability, facilitated communication, and a decreased risk of medical errors; however, important ethical concerns related to patient confidentiality remain. Although legal protections have been implemented, in practice, EHRs may be still prone to breaches that threaten patient privacy. Potential safeguards are essential, and have been implemented especially in sensitive areas such as mental illness, substance abuse, and sexual health. Features of one institutional model are described that (...) may illustrate the efforts to both ensure adequate transparency and ensure patient confidentiality. Trust and the therapeutic alliance are critical to the provider–patient relationship and quality healthcare services. All of the benefits of an EHR are only possible if patients retain confidence in the security and accuracy of their medical records. (shrink)

New technologies from artificial intelligence to drones, and biomedical enhancement make the future of the human family increasingly hard to predict and protect. This book explores how the philosophical tradition of virtue ethics can help us to cultivate the moral wisdom we need to live wisely and well with emerging technologies.

The accelerating adoption of electronic health record systems will have profound impacts on clinical care. It will also have far-reaching implications for public health research and surveillance, which in turn could lead to changes in public policy, statutes, and regulations. The public health benefits of EHR use can be significant. However, researchers and analysts who rely on EHR data must proceed with caution and understand the potential limitations of EHRs.Much has been written about the risk of EHR privacy breaches. This (...) paper focuses on a different set of concerns, those relating to data quality. Unlike clinical trial data, EHR data is not recorded primarily to meet the needs of researchers. Because of clinicians’ workloads, poor user-interface design, and other factors, EHR data is surprisingly likely to be erroneous, miscoded, fragmented, and incomplete. Although EHRs eliminate the problem of cryptic handwriting, other kinds of errors are more common with EHRs than with paper records. (shrink)

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes in conflict.Moreover, the (...) traditional, prosaic clinical encounter is evolving in an environment increasingly shaped by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored. (shrink)

The United States, like other countries facing rising health care costs, is pursuing a commitment to interoperable electronic health records. Electronic records, it is thought, have the potential to reduce the risks of error, improve care coordination, monitor care quality, enable patients to participate more fully in care management, and provide the data needed for research and surveillance. Interoperable electronic health records on a national scale — the ideal of a national health information network — seem likely to magnify these (...) advantages. Thus, the recent economic stimulus package contains considerable funding for the development of “health information technology architecture that will support the nationwide electronic exchange and use of health information in a secure, private, and accurate manner.”. (shrink)

One of the most significant changes in modern healthcare delivery has been the evolution of the paper record to the electronic health record (EHR). In this paper we argue that the primary change has been a shift in the focus of documentation from monitoring individual patient progress to recording data pertinent to Institutional Priorities (IPs). The specific IPs to which we refer include: finance/reimbursement; risk management/legal considerations; quality improvement/safety initiatives; meeting regulatory and accreditation standards; and patient care delivery/evidence based practice. (...) Following a brief history of the transition from the paper record to the EHR, the authors discuss unintended or contested consequences resulting from this change. These changes primarily reflect changes in the organization and amount of clinician work and clinician‐patient relationships. The paper is not a research report but was informed by an institutional ethnography the aim of which was to understand how the EHR impacted clinicians and administrators in a large, urban hospital in the United States. The paper was also informed by other sources, including the philosophies of Jacques Ellul, Don Idhe, and Langdon Winner. (shrink)

. Through examining a case study of a major fluids modelling code, this paper charts two key properties of software as a material for building models. Scientific software development is characterized by piecemeal growth, and as a code expands, it begins to manifest frustrating properties that provide an important axis of motivation in the laboratory. The first such feature is a tendency towards brittleness. The second is an accumulation of supporting technologies that sometimes cause scientists to express a frustration with (...) the bureaucracy of highly regulated working practices. Both these features are important conditions for the pursuit of research through simulation. (shrink)

Electronic health record (EHRs) have largely replaced obsolete paper medical charts. This replacement has produced an increased demand on physicians’ time and has compromised efficiency. In an attempt to overcome this perceived obstacle to productivity, physicians turned to medical scribes to perform the work required by EHRs. In doing so, they have introduced an uninvited participant in the physician-patient relationship and compromised patients’ confidentiality. Scribes may be a successful work around for physicians frustrated by EHRs, but patients’ confidentiality should not (...) be sacrificed in the process. (shrink)

PurposeThe purpose of this paper is to investigate how people communicate in organisations.Design/methodology/approachThe approach in doing this is based on two pillars. One being a philosophical phenomenological approach dealing mainly ethical questions concerning communication and interaction in designing and implementing electronic health records. The other is videoobservation of work procedures in hospitals because appropriate for unveiling tacit knowledge in an organisation.FindingsThe paper discusses the inappropriate design and implementation of actual EHR's in the Danish hospital system. Where the technology is based (...) on hierarchical and economic structured managerialist thinking and doing, that eliminates the everyday knowledge of nursing staff and the patient.Originality/valueThe value of this paper that it lays forward the inappropriate paradigmatic thinking of hospital systems concerning communication and interaction in designing and implementing EHRs. (shrink)