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)

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

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)

In information societies, operations, decisions and choices previously left to humans are increasingly delegated to algorithms, which may advise, if not decide, about how data should be interpreted and what actions should be taken as a result. More and more often, algorithms mediate social processes, business transactions, governmental decisions, and how we perceive, understand, and interact among ourselves and with the environment. Gaps between the design and operation of algorithms and our understanding of their ethical implications can have severe consequences (...) affecting individuals as well as groups and whole societies. This paper makes three contributions to clarify the ethical importance of algorithmic mediation. It provides a prescriptive map to organise the debate. It reviews the current discussion of ethical aspects of algorithms. And it assesses the available literature in order to identify areas requiring further work to develop the ethics of algorithms. (shrink)

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)

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)

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)

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)

Electronic health records are likely to improve health care but in the U.S. they will also enable health insurers to be more selective in deciding to whom to deny coverage or whose premiums to increase. In a Rawlsian social contract (1971) the veil of ignorance does not conceal general scientific information from the hypothetical contracting parties. Nonetheless, this paper shows that social contract considerations rule out risk selection as morally impermissible. Since modern health care must in effect be paid for (...) by public or private insurance, and doing so is efficient, this is a basic part of health care justice. But for information ethics this argument does not extend beyond cases in which provision of information serves to deny a social primary good to members of society. (shrink)

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)

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.

The American Recovery and Reinvestment Act of 2009 (ARRA) required healthcare providers in the United States to adopt and demonstrate meaningful use of electronic health records (EHRs) by January 1, 2014. In many ways, EHRs mark a notable improvement over paper medical records as they are more easily accessible and allow for electronic searching and sharing of medical history. However, as EHRs have become mandated by ARRA, many nurses now rely upon computers far more heavily during nurse–patient interactions, thereby decreasing (...) the level of direct interpersonal communication between the two. There is evidence that eye contact between nurses and patients positively affects patient satisfaction. Above and beyond the issue of patient satisfaction is the more basic ethical issue of respecting the patient as a person. The author argues that the templates used in electronic health systems have the possibility of eroding the respect for humanity that is the hallmark of nurse–patient relationships, as signalled by the American Nurses Association’s first principle in their Code of Ethics. Using concepts from philosophers Martin Heidegger and Emmanuel Levinas, the author provides guidance as to what an ethical interaction between nurse and patient should look like in an age of EHRs. (shrink)

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)

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)

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)

Evolving practice requires peer review of clinical ethics (CE) consultation for quality assessment and improvement. Many institutions have identified the chart note as the basis for this process, but to our knowledge, electronic health record (EHR) systems are not necessarily designed to easily include CE consultation notes. This article provides a framework for the inclusion of CE consultation notes into the formal EHR, describing a developed system in the Epic EHR that allows for the elaborated electronic notation of the CE (...) chart note. The implementation of the “meaningful use” criteria for EHR, mandated by the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, requires that health professionals meet certain standards for quality, efficiency, and safety, all of which overlap with the goals of standardization, peer review, and quality improvement within CE consultation. (shrink)

The term “Electronic Health Records” means something different to each of the stakeholders in health care, but it always seems to carry a degree of emotional baggage. Increasingly, EHRs are advertized as a nearly unmitigated good that will transform medical care, improve safety and efficiency, allow better patient engagement, and open the door to an era of cheap, effective, timely, and patient-centered care. Indeed, for some EHR proponents the benefits of adopting them are so obvious that adoption has become an (...) end in itself. But for others — and especially for a number of skeptical practitioners and patients — EHR is a code word that portends the corporate transformation of health care delivery, the loss of patient privacy, the demand that patients bear more responsibility in health care, and the unreflective takeover of the health care system by people who do not understand medical care or how health care relationships unfold. (shrink)

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.

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)

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)

Since the fourth century, B.C.E., the Oath of Hippocrates has been the starting point in analyzing the obligations of physicians to protect the privacy and confidentiality interests of their patients. The pertinent provision of the Oath reads as follows: “What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account must be spread abroad, I will keep to myself, holding such things shameful (...) to be spoken about.”This part of the Oath is subject to more than one interpretation, but its commonly accepted meaning provides the ethical foundation for the physician’s duty of confidentiality. The Oath expressly declares that a physician’s obligation of confidentiality applies beyond matters of medical care. At a time when there were no hospitals or physician offices, patients received medical care in their homes or in public places. Physicians treating patients in their homes could be expected to see and hear a wide range of activities that might be considered embarrassing, immoral, or even illegal. (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)

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.

Each year individuals are required to execute millions of authorizations for the release of their health records as a condition of employment, applying for various types of insurance, and submitting claims for benefits. Generally, there are no restrictions on the scope of information released pursuant to these compelled authorizations, and the development of a nationwide system of interoperable electronic health records will increase the amount of health information released. After quantifying the extent of these disclosures, this article discusses why it (...) is important to limit disclosures of health information for nonmedical purposes as well as how it may be possible to do so. (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)