Rationing Care through Collaboration and Shared Values

Although “rationing” continues to be a dirty word for the public in health policy discourse, Nir Eyal and colleagues handle the concept exactly right in their article in this issue of the Hastings Center Report. They correctly characterize rationing as an ethical requirement, not a moral abomination. They identify the key health policy question as how rationing can best be done, not whether it should be done at all. They make a cogent defense of what they call “rationing through inconvenience” as a justifiable allocational technique. And they wisely call for research on the effectiveness and fairness of this approach and other methods of rationing. I fully agree with their approach to rationing and with their argument that the process they provocatively label “rationing through inconvenience” should not be rejected out of hand. But I believe they have underestimated two ways in which the practical impacts of rationing through inconvenience limit its potential usefulness: the asymmetry of its effect on patients and physicians and the way in which it reduces the capacity of health systems to learn from experience.     

Paces of Costly Care: Rare Disease Drug Access in Canada

ABSTRACT

Pharmaceutical industry representatives and public drug plan managers hold competing visions of drug access, ones I theorize as “fast” and “slow” care paces. The relationship between free market imaginaries and population-based biopolitics is negotiated through these paces from within the flexible political category of rare disease. In this article, I explore expensive rare disease drug access in Canada’s universal health system through a temporal lens. I show how two families navigate these powerful negotiations, asserting themselves as deserving of resources while finding ways to consider life and death outside of this clash between health system pragmatics and pharmaceutical promise.     

Using Facts to Moderate the Message

The Public Policy Advisory Network on Female Genital Surgeries in Africa has written an article expressing concern about the media's inaccurate depiction of this practice and suggesting a more fact‐based approach to reporting on it. I applaud the network for soliciting input from various fields. I cannot agree more that some in the media have misconstrued, exaggerated, and used inflammatory language; words like “torture,” “barbaric,” and “horrific” will likely enrage readers while reinforcing discrimination against women who practice or have undergone genital cutting. The authors also assert that “any genuine public policy debate should be grounded in the best available evidence and begins with fact checking.” Again, I couldn't agree more. My concern is that there is bias in the way some of the data are presented in this article.     

Towards Communicative Justice in Health

This article approaches care from a different angle by looking ethnographically at how it is shaped by structural differences in the power to control the circulation of knowledge. I focus on an investigation conducted by people classified as “indigenous”, of an epidemic that killed 38 children and young adults in a Venezuelan rainforest. I trace how health/communicative inequities structured clinical interactions, documents, epidemiological investigations, news stories, and dialogues with healers, thwarting the identification of the epidemic, clinically identified as rabies. Although the Bolivarian socialist government provided access to care, professionals denigrated parents’ contributions to care and communication and reduced complex, unequal relations between languages to practical problems of translation. Pointing to parallels with US social movements, I suggest that responding to demands for communicative justice in health requires seeing how health inequities are entangled with health/communicative inequities. The typographical slash points to importance of challenging the subdisciplinary boundary-work that relegates their study to non-overlapping conversations in medical and linguistic anthropology.     

Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized

If I told you that screening technologies are iteratively transforming how people experience pregnancy and early parenting, you might take notice. If I mentioned that a new class of newborn patients was being created and that particular forms of parental vigilance were emerging, you might want to know more. If I described how the particular stories told about screening in public, combined with parents’ fierce commitment to safeguarding their children’s health, make it difficult for problematic experiences with screening to translate into negative opinions about it, you would most likely be intrigued. An extensive qualitative literature documents all these social phenomena, and more, in connection with the spread of prenatal and newborn screening. So why is it, then, that commentators frequently assert that the predicted psychosocial impact of increased screening and testing associated with “the genomic revolution” has been far less severe and worthy of attention than predicted? How can or should social science “evidence” that sits outside adopted measurement conventions be considered? Why is it that summary statements about the psychosocial impact of genomic information often ignore qualitative evidence, or sideline it as relevant only for improving communication among patients, clinicians, and public health systems? This essay addresses such questions, using qualitative research on prenatal and newborn screening as a case study for illustrating the broad methodological, ideological, and dialogical issues at stake.     

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they “promote misinformation about vaccines” and for treatment at a German clinic offering unproven cancer treatments due to “the need to make sure people are equipped to make well‐informed decisions.” GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms.     

Laypeople Are Strategic Essentialists,Not Genetic Essentialists

In the last third of the twentieth century, humanists and social scientists argued that attention to genetics would heighten already‐existing genetic determinism, which in turn would intensify negative social outcomes, especially sexism, racism, ableism, and harshness to criminals. They assumed that laypeople are at risk of becoming genetic essentialists. I will call this the “laypeople are genetic essentialists model.” This model has not accurately predicted psychosocial impacts of findings from genetics research. I will be arguing that the failure of the model can be traced to its inability to recognize the complexity of laypeople’s attitudes; its incorrect theory of how beliefs, attitudes, and discourse function; and its blindness to how academics’ own interests can override the available evidence. More specifically, I suggest that the substantial data about laypeople’s deployment of genetics supports what I will call the “laypeople are strategic essentialists model” better than the “laypeople are genetic essentialists model.” The strategic essentialists model holds that people tend to store multiple categories, including multiple causal forces, that they deploy “strategically” to serve context‐dependent goals. It will be difficult for academics to reorient ourselves to model laypeople as sophisticated strategic essentialists rather than as naïve genetic essentialists. Perhaps a little shift, however, will be of value.     

Unhealthy Partnerships and Public Health: Breaking Free of Industry

In the ambitious new book The Perils of Partnership: Industry Influence, Institutional Integrity, and Public Health, Jonathan Marks argues that far too much baggage is being piled on an old workhorse, conflict of interest. It’s an important concept, he asserts, but public‐sector actors can transgress their ethical obligations even when their relations with industry don’t create conflicts of interest. Yet policy‐makers have been immersed in public‐private partnerships for so long that they do not see the broader implications of such relationships. Marks aims to move the discourse from reassuring terms like “engagement” and “inclusiveness” to concepts that capture the problematic side of the liaisons, like “webs of influence” and “agenda distortion.” Above all, he issues a challenge to public health policy‐makers: Ditch the comfortable hand‐in‐hand industry relationships, which prioritize efficacy over ethics, threatening both the public’s health and the integrity of public health institutions. Adopt instead a paradigm that is “mano a mano,” involving tension, struggle, and, at times, direct conflict with private industry.     

Open Questions

A few items in this issue of the Report explore a hodge-podge of questions associated with cutting-edge genetics research. In the lead article, Charles Dupras and Vardit Ravitsky look at research into epigenetics, which refers to molecular mechanisms that affect how genes are expressed. As Dupras and Ravitsky explain, research into epigenetics might turn out to be useful for developing environmental and social strategies for improving public health, but it might also end up leading to clinical tools—tools that work at the “molecular” instead of the social level and that target individuals rather than the collective public. Dupras and Ravitsky plainly hope to see a good effort to develop environmental and social strategies, and they fear that funding and interest will go mostly the other way, toward ever more “molecular” interventions. That trend in funding and interest is reflected, to some degree, in the second article, in which Oscar Zarate and colleagues explore how the Personal Genome Project, an endeavor launched at Harvard University to collect and share personal genetic and health information in order to facilitate research, is perceived by the people who consent to be part of it. Questions about open consent and subjects' role in fostering research recur in several shorter contributions to this issue. In the lead essay, Carl Elliott reflects on how and why the language used to describe research has been updated (“subjects” giving way to “participants” and “experimentation” to “research”) and suggests that the changes reflect an effort to deflect concerns about the treatment of subjects.     

Realigning Pakistan's Bioethics Center during Covid-19

The arrival of the Covid-19 pandemic in Pakistan necessitated that the Centre of Biomedical Ethics and Culture in Karachi realign its activities to changing realities in the country. As Pakistan's only bioethics center, and with no guidelines available for allocation of scarce medical resources, CBEC developed “Guidelines for Ethical Healthcare Decision-Making in Pakistan” with input from medical and civil society stakeholders. The CBEC blog connected to the center's bioethics programs for students from Pakistan and Kenya shifted to Covid-related issues specific to the context of existing social and political realities within these countries. As part of its outreach activities, CBEC initiated a popular Facebook series, #HumansofCovid, as an experience-sharing platform for health care professionals and members of the public. Narratives received vary from those by frustrated physicians under quarantine to those concerning street vendors left jobless and a transsexual person in whose opinion “social distancing” is not a new phenomenon for their communities.     

Rough Justice

In the Perspective in this issue of the Hastings Center Report (September‐October 2017), Barron Lerner contrasts the “true believers” in public health schools—“people willing to crusade for any program designed to reduce morbidity and mortality”—and the political operators in the “real world” who often stand in their way. Lerner takes us through some of those programs, both past efforts that were successful and widely accepted and current endeavors that look promising but face all sorts of obstacles. Keep the faith, he admonishes. The “winds change and public health efforts currently out of favor can once again gain support.” Lerner's meditation‐cum‐exhortation is one of six essays in this issue about how to set and pursue public health goals in light of the gap between ideals and reality.     

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.     

Quarantine Controversy: Kaci Hickox v. Governor Chris Christie

Nurse Kaci Hickox is among the “Ebola Fighters” honored by Time magazine as its 2014 Person of the Year, having treated Ebola patients in Sierra Leone while volunteering with Médecins Sans Frontieres. When she returned to the United States in October 2014, she was quarantined in New Jersey for three days before returning home to Maine under the terms of a negotiated release. A year later, in October 2015, Hickox filed suit in federal court against Governor Chris Christie and New Jersey health officials, claiming that the quarantine violated her civil rights. Her complaint asserts that New Jersey officials lacked the authority to quarantine her because she did not pose a significant risk of transmission. The lawsuit raises important questions about disease‐transmission risk, the inability of science to rule out certain theoretical risks, and the state's power to quarantine. It also demonstrates that population health depends on respecting individual liberty and using the best available epidemiological data to set public health policy.     

Bystander Ethics and Good Samaritanism: A Paradox for Learning Health Organizations

In 2012, a U.S. Institute of Medicine report called for a different approach to health care: “Left unchanged, health care will continue to underperform; cause unnecessary harm; and strain national, state, and family budgets.” The answer, they suggested, would be a “continuously learning” health system. Ethicists and researchers urged the creation of “learning health organizations” that would integrate knowledge from patient‐care data to continuously improve the quality of care. Our experience with an ongoing research study on atrial fibrillation—a trial known as IMPACT‐AFib—gave us some insight into one of the challenges that will have to be dealt with in creating these organizations. Although the proposed educational intervention study placed no restrictions on what providers and health plans could do, the oversight team argued that the ethical principle of beneficence did not allow the researchers to be “bystanders” in relation to a control group receiving suboptimal care. In response, the researchers designed a “workaround” that allowed the project to go forward. We believe the experience suggests that what we call “bystander ethics” will create challenges for the kinds of quality improvement research that LHOs are designed to do.     

Personalized genomic medicine and the rhetoric of empowerment

A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.” What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability to be “personalized,” “predictive,” “preventive,” and “participatory.” Some call personalized genomic medicine “P4 Medicine,” inscribing these cardinal virtues into the movement's name. All of these putative virtues have interesting implications for the future of health care. In this essay, we are especially interested in the claims that personalized medicine will lead to a more “participatory” or “patient‐centered” approach to health care, in which patients are “empowered” to take more personal control over their care. The rhetoric of patient empowerment is nothing new in health care, but personalized medicine is an interesting case study because it portrays empowerment as one of its key virtues and as a mechanism for fixing the health care “crisis.”     

Glossed Over

I open the glossy cover of my alma mater's alumni magazine. Images of new frontiers in medicine abound—state‐of‐the‐art research buildings and the latest in high‐tech hospital innovations. Nestled among the articles on cutting edge medicine is a feel‐good story about medical students. The article profiles volunteer medical students and their uninsured patients with chronic health conditions. At one site, they are touted as providing “the only medical care.” Indeed. I think back to my medical student days and cringe.     

The Disposable Author: How Pharmaceutical Marketing Is Embraced within Medicine's Scholarly Literature

The best studies on the relationship between pharmaceutical corporations and medicine have recognized that it is an ambiguous one. Yet most scholarship has pursued a simpler, more saleable narrative in which pharma is a scheming villain and medicine its maidenly victim. In this article, I argue that such crude moral framing blunts understanding of the murky realities of medicine's relationship with pharma and, in consequence, holds back reform. My goal is to put matters right in respect to one critical area of scholarly interest, the medical journal publication. Pharma relies on peer advocacy to sell its wares to prescribing doctors. This is an arrangement in which clinicians’ qualified colleagues, including “key opinion leaders,” are recruited by pharmaceutical corporations and marketing agencies to deliver commercially expedient content to their professional fellows. Precisely how this practice works in the setting of publications is not well understood because ethicists studying the problem have made too much of the narrative of corporate villainy and medical victimhood. Accordingly, criticism of industry publications has been preoccupied with the crudely dishonest practices of ghostwriting, ghost authorship, and “ghost management,” vices condemned as “dirty little secrets” perpetrated from “behind the scenes” with the connivance of academic “shills” or “guest authors,” in contempt of standards set by the International Committee of Medical Journal Editors. This account is appealing, and yet it is wrong or, at the very least, seriously incomplete, with only limited relevance to the actualities of contemporary industry practices. In truth, many commercial publications are not developed in secret but fashioned within a culture of open collaboration, where academic authors make substantial, independent contributions; pharmaceutical companies are showcased rather than hidden; and medicine's editorial standards assist rather than impede the workings of commerce.     

Competence in Plain English

Like many other bioethicists, I often give talks on clinical topics that may touch on the patient's right of autonomy with regard to medical treatment and, from there, may move to questions about whether said patient has the capacity to exercise said right. When I get to that subject, I might ask, “Is this person competent to refuse treatment?” A stunned silence falls over the room, until finally a hand shoots up. “‘Competent’ is a legal term,” I am instructed. “Don't you mean to ask whether he has the capacity to make decisions for himself?” The tone suggests that I'm being helped to make a very important distinction. But it's not a very important distinction; and it's misleading to boot.