Can the Case Report Withstand Ethical Scrutiny?

Since antiquity, doctors have employed case reports as an essential and ongoing part in communicating information about patients and their diseases to their colleagues and, at times, to the wider, nonmedical world. Given how useful case reports have been, a legitimate and persuasive argument could be made to retain them in modern medical literature. But there is an emerging problem with case reports. As the ability to publish and disseminate the information contained in them has become easier, the capacity for individuals to maintain their privacy and restrict access to their personal information has become more strained, and it has become more difficult for doctors who tell clinical stories to respect the confidentiality of their patients while still communicating the pertinent details of their cases. Does the acknowledged educational and scientific value of (some) case reports justify the threat to personal privacy that may be entailed by the format itself?     

Nano-technology and privacy: on continuous surveillance outside the panopticon

We argue that nano-technology in the form of invisible tags, sensors, and Radio Frequency Identity Chips (RFIDs) will give rise to privacy issues that are in two ways different from the traditional privacy issues of the last decades. One, they will not exclusively revolve around the idea of centralization of surveillance and concentration of power, as the metaphor of the Panopticon suggests, but will be about constant observation at decentralized levels. Two, privacy concerns may not exclusively be about constraining information flows but also about designing of materials and nano-artifacts such as chips and tags. We begin by presenting a framework for structuring the current debates on privacy, and then present our arguments.     

"Neither of meate nor drinke, but what the Doctor alloweth": medicine amidst war and commerce in eighteenth-century Madras

Madras in the eighteenth century was a site of continuous warfare sparked mostly by trading interests. This paper studies how these influences of hostility and commerce shaped the medical establishment of the English East India Company. It begins by analyzing the struggle of the medical establishment to cope with military and logistical requirements; it then shows how the Coromandel trade provided a peculiar dynamic to the practice of medicine in Madras. By aligning the history of medicine with that of trade, the paper traces the parallel trajectories of intellectual and material wealth. The development of modern medicine is seen as a process of adjusting to and engaging with diverse ideas and items--sometimes co-opting them, sometimes realigning them in new modes of production.     

The decline of uroscopy in early modern learned medicine (1500-1650)

From the early sixteenth century, uroscopy lost much of the great appeal it had possessed among medieval physicians. Once valued as an outstanding diagnostic tool which ensured authority and fame, it became an object of massive criticism if not derision. As this paper shows, growing awareness of theoretical inconsistencies, the new medical empiricism and humanistic opposition against Arabic and medieval predecessors can explain this drastic revaluation only in part. Uroscopy, it is argued here, came to be perceived above all as a threat to the physicians' professional authority. Faced with persistent demands that they diagnose diseases primarily if not exclusively from urine, they were left with an awkward choice. They risked making fools of themselves by blatant misdiagnosis, but if they rejected the patients' demands people would deem them incapable of a task which many of their less educated competitors were perfectly happy to perform. In the end, in spite of the physicians' massive campaign against it, uroscopy remained very much alive. On the highly competitive early modern medical market patient power had once more prevailed.     

Subterranean Fire. Changing theories of the earth during the Renaissance

Aristotle described the earth as a cold and dry body and paid no attention to the phenomenon of terrestrial heat. Renaissance physicians, by contrast, when seeking to understand the origin of hot springs in the context of their balneological studies, came to defend a theory of subterranean fires. This tradition, which started in Italy, became widely known through the works of Georgius Agricola. But although it had implications for the explanation of further natural phenomena, it remained almost exclusively confined to medical circles. As far as physics as an academic discipline was concerned, the ideas concerning subterranean fire were hardly taken note of. Only with the collapse of Aristotelian philosophy in the seventeenth century could these by then "old innovations" obtain a wider significance.     

Using Monkeys to Understand and Cure Parkinson Disease

Research with nonhuman primates is essential to medical progress and will still be necessary for the foreseeable future. Almost all research scientists agree that animal research is critical to understanding basic biology, discovering new treatments for human (and animal) diseases, and maximizing the safety of new medicines while minimizing their harm to humans. All but two of the Nobel prizes in medicine awarded over the last one hundred years have depended on animal research, and the list of modern medicines, vaccines, and other treatments, as well as basic science discoveries, is so extensive that it could not be adequately covered in even a huge volume. Increases in average life span in the last century are the result of improved public health measures, and many diseases may be related to lifestyle choices. But animal research has contributed to understanding these factors and to the development of vaccines and lifesaving treatments. The philosophical debate regarding the benefits and moral costs of animal research has also filled many volumes by ethicists and philosophers. The major arguments against the use of animals in medical research have been explicitly refuted by a few brave scientists, as well as implicitly by the vast majority of the working biomedical science community. My contribution to this discussion is to provide a personal perspective on my decision if, when, and how to use monkeys in research experiments on Parkinson disease. As a physician researcher, I have been working for many years to understand and cure Parkinson disease.     

The Right to Know: A Revised Standard for Reporting Incidental Findings

During the course of biomedical research, researchers sometimes obtain information on participants that is outside the aim of the study but may nonetheless be relevant to the participants. These incidental findings, as they are known, have been the focus of a substantial amount of discussion in the bioethics literature, and a consensus has begun to emerge about what researchers should do in light of the possibility of incidental findings. A consensus, however, is not necessarily correct. In this article, we address the common view that reporting of incidental findings should be based primarily on the possibility of medical benefit, factoring in the findings’ validity, clinical actionability, and significance to health or reproduction. While such medical beneficence should not be discarded, the need to give proper attention to participants’ autonomy, privacy, and interests (especially considering discussion of participants’ right not to know) suggests an alternative standard for when to report incidental findings: even if they are of no direct medical benefit, incidental findings should be reported based on the extent to which the participant can be expected to comprehend the information. We will offer a preliminary defense of this alternative as best respecting participants’ autonomy and privacy and promoting their interests. However, we acknowledge that the standard would face significant practical barriers, and these barriers lead us to propose a metaconsent addendum that would allow subjects to essentially waive the comprehension standard when resource or other constraints make meeting it impracticable.     

Being Better Bodies

Bioethics has an uneasy relationship with embodiment. Only with vigilance does knowledge of the body as it is lived counterbalance the momentous inertia of knowledge of the body as an object brought about by modern medical sciences. As a field tethered to detached, technical ways of knowing the world, bioethics must toil to treat the body as more than mere material and machine. To be more is, among other things, to be social—to live in the thickets of interdependence and the institutions and practices we build, hone, and defend to facilitate it. I take this tension to define the ultimate stakes of Melinda Hall's The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics. Hall homes in on transhumanism, the idea that we should embrace technology to vault beyond current human limitations. Yet the work serves as a reminder for all bioethicists and philosophers of how easily one can be led astray by otherwise irreproachable values when they are disconnected from the conditions and realities of human life, including being irremediably interdependent embodied beings. Put more acerbically, the book is a reminder of how thinking goes wrong when divorced from the principal sources out of which human appraisals emerge: our fleshy, messy, social bodies.     

International Health Research after Schrems v. Data Protection Commissioner

On October 6, 2015, in Schrems v. Data Protection Commissioner, the European Court of Justice, the European Union's highest court, held that the fifteen‐year‐old Safe Harbor Framework Agreement with the United States was invalid. Under the agreement, about forty‐five hundred American companies each year self‐certified to the U.S. Department of Commerce that they were in compliance with the essential privacy protections of the European Union, and therefore it was permissible for entities in the European Union to send personal data to these American companies. According to the court, because some American companies were making the personal data of E.U. citizens available to U.S. government agencies, such as the National Security Agency (NSA), the fundamental privacy interests of E.U. citizens were not being protected. As a result of this court decision there has been considerable speculation about what, if any, effect the case has on international collaboration in health research, in particular, the sharing of personal data by E.U. researchers with their U.S. colleagues.     

Enlightened physicians: setting out on an elite academic career in the second half of the eighteenth century

In the second half of the eighteenth century, medical doctors faced heavy competition. They competed for patients and for institutional positions and sought a variety of means to enhance their reputations. Among rank-and-file physicians, some strove to respond to the high expectations and rational discourse fueled by Enlightenment philosophy. They aimed to build a new medicine on rational and empirical principals. Concentrating on the rich correspondence left by young physicians born in Geneva, this article maps out the social and moral dilemmas encountered by ambitious young physicians in the second half of the eighteenth century, who, like many thousands of others, flocked to Edinburgh, "the first medical school" in Europe. Conscious that they formed but one group among a series of possible practitioners, they pondered over cultural codes, civilities and economic realities as they strove to promote the figure of a knowledgeable, experienced, gentlemanlike physician.     

(Mis)understanding Science: The Problem with Scientific Breakthroughs

On Saturday morning, February 28, 1953, the mystery of heredity appeared secure. Humans hadn't the faintest idea of how genetic information was transmitted—how the uncanny resemblance between mother and daughter, grandfather and grandson was conveyed across generations. Yet, by that Saturday afternoon, two individuals, James Watson and Francis Crick, had glimpsed the solution to these mysteries. The story of Watson and Crick's great triumph has been told and retold and has rightly entered the pantheon of scientific legend. But Watson and Crick's breakthrough was just that: a rupture and dramatic discontinuity in human knowledge that solved a deep mystery, the likes of which occurs, perhaps, a couple of times each century. And that's the problem. The story is just so good and so irresistible that it has misled generations of scientists about what to expect regarding a life in science. And more damaging, the resulting breakthrough mentality misleads the public, the media, and society's decision‐makers about how science really works, all to the detriment of scientific progress and our society's well‐being.     

Fetal Privacy and Confidentiality

As the range of conditions for which we can test prenatally expands, society and the medical profession need to develop guidelines about which tests ought to be offered and which ought not to be. Notions of fetal privacy and confidentiality can help to define limits to what parents may reasonably learn about their future child.     

Gender,identity, and bioethics

Transgender people and issues have come to the forefront of public consciousness over the last year. Caitlyn Jenner' very public transition, heightened media coverage of the murders of transgender women of color, and the panicked passage of North Carolina's “bathroom bill” (House Bill 2), mean that conversations about transgender health and well‐being are no longer happening only within small communities. The idea that transgender issues are bioethical issues is not new, but I think that increased public awareness of transgender people and the ways that their health is affected by systems that bioethics already engages with offers an opportunity for scholarship that works to improve transgender health in meaningful ways.     

One Ventilator Too Few?

Sometimes it's better to be lucky than good. As new blood filled our young patient's veins, her breathing became regular and her pulse full. She was so far gone I would not have expected her to recover consciousness for a day, if at all, but within an hour, she began to wake up. We removed the breathing tube a couple of hours later— no ventilator ever needed. As life‐sustaining technology becomes more widely available in fortunate parts of the developing world, benefits come with complications. The temptation is to focus on the thing—the ventilator itself—as the crucial element and press to buy more, mistaking the problem for one of resource scarcity only. But we need a culturally relevant ethical framework to guide the use and withdrawal of ventilators and similar life‐sustaining tools. Resource scarcity is only part of the problem. Buying additional ventilators only defers allocation decisions and entirely fails to address end‐of‐life suffering. It is unsustainable in Rwanda; it is a dubious solution anywhere. The intangible need for an ethical framework hides beneath apparent scarcity and, when this need is not addressed and luck runs out, one salvageable patient can die for want of a ventilator that serves only to prolong the suffering of another.     

Too sick

This issue of the Report is bookended by two pieces that take contrasting although perhaps compatible positions on medical care for those in dire straits. At the end of the issue is an article that considers whether patients may be denied admission to intensive care units on grounds that they are too sick to benefit. We think of ICUs as reserved for the sickest of the sick, notes author Andrew Courtwright, but in fact, “too sick to benefit” is an increasingly common reason given for not putting a patient in the ICU. Meanwhile, the first essay in the book tells the story of a man whose physician more or less told him he was too sick to benefit (under some understanding of the idea) and should opt for death.     

Digital Contact Tracing,Privacy, and Public Health

Digital contact tracing, in combination with widespread testing, has been a focal point for many plans to “reopen” economies while containing the spread of Covid-19. Most digital contact tracing projects in the United States and Europe have prioritized privacy protections in the form of local storage of data on smartphones and the deidentification of information. However, in the prioritization of privacy in this narrow form, there is not sufficient attention given to weighing ethical trade-offs within the context of a public health pandemic or to the need to evaluate safety and effectiveness of software-based technology applied to public health.     

Matters of life and death: the hospital of San Pedro in Puebla, 1790-1802

The last decade of the eighteenth century may be described as a "golden age" in the history of the Hospital of San Pedro of Puebla. Under the stewardship of its director, Father Ignacio Domenech, San Pedro underwent an extensive renovation of its physical plant and a thorough administrative reorganization that turned it into one of the best medical care and research institutions in New Spain. The article draws a profile of the patients who filled the hospital's wards and adds a human dimension to the many names and ailments listed in the registries. It also describes the valiant efforts of the medical staff who daily shared the patients' struggle against illness. Fighting immense odds, the practitioners sought to provide good-quality care and to further their limited understanding of disease. A detailed analysis of San Pedro's everyday life reveals a portrait of human suffering, professional dedication, and humanity's pursuit of knowledge.     

Doctor's order: an early modern doctor's alchemical notebooks

This is a case study on a series of at least thirty-four sixteenth-century notebooks from the Sloane collection, which reconsiders early modern notetaking techniques and the organisation of knowledge. These notebooks were written by an anonymous compiler, a physician who read widely in the alchemical and medical literature available in his lifetime, the late sixteenth century. In the alchemica, he devotes individual volumes to specific alchemical substances, which are connected with each other by means of a complex system of cross-referencing; they are constantly revised and change appearance according to the physician's latest ideas about alchemical medicines. As a result, the notebooks not only preserve received information (a task otherwise performed by commonplace books in this period)--they also represent an equivalent to the alchemical workshop, where the combination of different textual elements generates knowledge.     

Genomic Justice and Imagined Communities

In this issue of the Hastings Center Report, Maya Sabatello and Paul Appelbaum explore the assumptions about community embedded in the U.S. Precision Medicine Initiative, which aims to recruit donor‐partners who reflect the United States’ racial and ethnic diversity. As Sabatello and Appelbaum discuss, the initiative is like other national biobanking efforts in bringing to life an imagined genetic community in need of critical attention, and given the public‐private forms of partnership at the heart of the PMI, such efforts could become avenues to deepen existing inequalities rather than to alleviate them. The notion of justice has underwritten debates about genomic medicine, informed consent, citizenship, benefit sharing, and profit making since the first national biobanking project emerged at the dawn of the twenty‐first century. In a paradigmatic case, the creation, by an Icelandic company, of the deCODE genomic biobank opened up fierce debates about the proper relationship between public good and private gain and became the first global example of the economic and political implications that imagined genetic communities could have in our shared future. In Mexico, in 2001, the Icelandic case fueled a policy agenda to deal with global health justice and the prospects of a future market‐based colonialism predicated on the intimate knowledge of DNA.     

Contested cumulations: configurations of cancer treatments through the twentieth century

The treatment of cancer through the twentieth century may be seen as the successive addition of modalities: first surgery; then radiotherapy, especially between the world wars; and then chemotherapy, from the 1960s. This paper explores some of the systematic differences between the modalities, and how these additions were negotiated in different countries, with different long-term consequences for the development of services and specialization. It focuses chiefly on the United Kingdom and the United States, the former exemplifying a centralized health polity, and the latter, liberal markets combined with large and crucial postwar inputs from government. The differences between health polities were especially important for interwar radiotherapy, which in its centralized form appeared as paradigmatic of the analytical/rationalizing mode in modern medicine. Chemotherapy exemplified a more inventive and experimentalist mode that became common after World War II, and that, through the practice of trials, shaped the new subprofession of medical oncology. The interactions of the modalities, at various levels, are modeled as contested cumulations showing strong path dependency. The paper ends by reviewing the present situation, especially for Britain, and by underlining the relevance of history.