Human‐Animal Chimeras, “Human” Cognitive Capacities,and Moral Status

In “Human‐Animal Chimeras: The Moral Insignificance of Uniquely Human Capacities,” Julian Koplin explores a promising way of thinking about moral status. Without attempting to develop a model in any detail, Koplin picks up Joshua Shepherd's interesting proposal that we think about moral status in terms of the value of different kinds of conscious experience. For example, a being with the most basic sort of consciousness and sentience would have interests that matter morally, while a being whose consciousness featured the riches of loving affection, say, might have greater moral status and therefore deserve some sort of priority if the interests of the two beings conflicted. This approach represents an improvement over the more common, transparently anthropocentric habits of thinking about moral status, whether in connection with evaluating human‐animal chimera research, deciding what one can ethically eat, or pursuing some other moral inquiry.     

Human‐Animal Chimeras: The Moral Insignificance of Uniquely Human Capacities

Human‐animal chimeras—creatures composed of a mix of animal and human cells—have come to play an important role in biomedical research, and they raise ethical questions. This article focuses on one particularly difficult set of questions—those related to the moral status of human‐animal chimeras with brains that are partly or wholly composed of human cells. Given the uncertain effects of human‐animal chimera research on chimeric animals’ cognition, it would be prudent to ensure we do not overlook or underestimate their moral status. However, to assess moral status, we first need to determine what kinds of capacities are morally relevant. The standard view holds that it matters, morally, if chimeric animals develop uniquely human cognitive capacities. I argue that this view is mistaken, highlighting three problems with it: that we can think of examples of uniquely human cognitive capacities that are not morally significant, that we can think of examples of morally significant cognitive capacities that are not uniquely human, and that evidence that some cognitive capacity is shared with nonhuman animals does not undermine claims that this capacity is morally significant. We need a better framework for thinking about the moral status of part‐human beings.     

Animals with Human Cells in Their Brains: Implications for Research

In “Human‐Animal Chimeras: The Moral Insignificance of Uniquely Human Capacities,” Julian Koplin argues against the views that all uniquely human traits have moral significance or that all the traits humans have in common with other animals “are morally insignificant.” He recommends instead the adoption of “a better framework for thinking about the moral status of part‐human beings,” one that emphasizes the “phenomenal value (or disvalue)” chimeric animals are likely “to enjoy (or suffer).” If the moral status of these chimeric animals is grounded in the phenomenal value of their interests—that is, their interests as nonhuman animals—current protections for animals used in research may be inadequate to protect those interests.     

Patient Care to Public Health to Synthetic Biology

The January‐February 2018 issue of the Hastings Center Report includes pieces addressing patient care concerns that lie at the original core of bioethics and pieces that reflect the field's growing breadth. Among the pieces getting at the original core is an article by philosopher Daniel Brudney on the moral values underpinning surrogate decision‐making. The article and the two commentaries that follow it contribute to the debate on the moral authority of surrogate decision‐makers. Several items in the issue take up matters of public health and health policy. For example, the lead article, by Nir Eyal, examines the ethics of using inconvenience—waiting lists and the like—to constrain the consumption of health care services, and a commentary by Lawrence Gostin examines the regulation of sugary beverages. A supplement to the issue contains a special report about the tools and processes used to assess the impact of emerging technologies, with a focus on synthetic biology.     

It's All Relative

In this issue of the Hastings Center Report, Daniel Brudney suggests that clinicians have an overly deferential attitude toward their patients’ surrogate decision‐makers that is rooted in a wrongful investment of moral authority. He maintains that surrogate decision‐makers have no moral right to decide for their loved ones and that their value in the decision‐making process is limited to their knowledge of their loved one's preferences. If operationalized, Brudney's framework would ease the way for clinicians to remove a surrogate who cannot provide information relevant to the patient's preferences and to resort to a paternalistic model of decision‐making. Brudney fails to consider that the value of the surrogate does not flow from the surrogate, but rather from the patient's moral claim to have decisions made for him or her by a loved one. This claim recognizes that surrogates have intrinsic value through their relationship to and knowledge of the patient. Bioethics consultation services can assist clinical teams in engaging with the human crowd that surrounds each patient and navigating conflicting values and goals. This relational approach embraces the “mire and blood” that is endemic to relationships and clinical encounters.     

The Different Moral Bases of Patient and Surrogate Decision‐Making

My topic is a problem with our practice of surrogate decision‐making in health care, namely, the problem of the surrogate who is not doing her job—the surrogate who cannot be reached or the surrogate who seems to refuse to understand or to be unable to understand the clinical situation. The analysis raises a question about the surrogate who simply disagrees with the medical team. One might think that such a surrogate is doing her job—the team just doesn't like how she is doing it. My analysis raises the question of whether (or perhaps when) she should be overridden. In approaching this problem, I focus not on the range of difficulties in practice but on the underlying moral conceptual issue. My concern will be to show that the moral values that underpin patient decision‐making are fundamentally different from those that underpin surrogate decision‐making. Identifying the distinctions will set parameters for any successful solution to the “Who should decide?” question. A patient has a specific kind of moral right to make her own medical decisions. A surrogate has no analogous moral right to decide for someone else. We want the surrogate to make the decision because we believe that she has a relevant epistemological advantage over anyone else on the scene. If and when she has no such advantage or if she refuses or is unable to use it, then there might not be sufficient reason to let her be the decision‐maker.     

On Avoiding Deep Dementia

Some people will confront Alzheimer's with a measure of resignation, a determination to struggle against the progressive debilitation and to extract whatever comforts and benefits they can from their remaining existence. They are entitled to pursue that resolute path. For other people, like myself, protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect. The critical question for those of us seeking to avoid protracted dementia is how best to accomplish that objective. One strategy is to engineer one's own death while still mentally competent to do so (even in the stage of mild dementia). If I were to use a preemptive strategy in the face of a dementia diagnosis, I would probably choose to stop eating and drinking, a process known as voluntarily stopping eating and drinking. An alternative tactic for avoiding prolonged dementia would be to allow oneself to decline into moderate dementia—thus losing capacity to perform self‐deliverance or even to make serious medical decisions—but before getting to that point to provide advance instructions rejecting prospective life‐sustaining medical interventions. These advance instructions would authorize palliative but not curative measures. My current personal instructions define the point of intolerable cognitive decline triggering medical nonintervention as “mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.” These instructions dictate allowing my demise at a point of moderate dementia when I may not be perceptibly suffering, when I may still be getting some rudimentary satisfaction from my debilitated life, and when I no longer recall the preoccupation with personally intolerable indignity that motivated my instructions. Can I expect that my advance instructions will be implemented in those circumstances? Is it lawful, and is it moral for a surrogate decision‐maker and associated caregivers to allow an uncomprehending, ostensibly content but demented individual to die? My analysis herein contends that it is not only lawful and moral but also legally required to implement clear, considered advance instructions even at a stage of moderate dementia.     

The Problem of Clinical Deception and Why We Cannot Begin in the Middle

In this brief commentary, I offer an appreciative yet critical analysis of Abram Brummett and Erica Salter's article, “Mapping the Moral Terrain of Clinical Deception.” I challenge the authors to clarify their choice of the term “deception” (as opposed to “lying” or “dishonesty”), and I explain how these different terms may affect one's moral analysis. I also draw attention to the authors’ claim that veracity is the ethical default of clinicians. I argue that their failure to defend this claim renders their framework more limited in its usefulness than they seem to acknowledge. While their framework does an excellent job of identifying morally salient features of clinical deception, it cannot be used to measure the strength of justification for an act of deception apart from a normative conception of truthfulness.     

Beyond Autonomy and Best Interests

According to bioethics orthodoxy, the question, “What would the patient choose?” is a question about the patient's autonomy. is at stake. In fact, what underpins the moral force of that question is a value different from either autonomy or best interests. This is the value of doing things in a way that is authentic to the person     

Children's health inequalities: ethical and political challenges to seeking social justice

Childhood obesity may have severe long‐term consequences for health—indeed, for the overall course of a person's life. Do these harms amount to a problem of social justice? And if so, what should be done about it? Parents are usually granted considerable leeway to make decisions that affect their children's health. Social and moral theory has often overlooked the family, however, leaving us with an inadequateunderstanding of parental autonomy and of how social policy may influence it.     

Global bioethics

This August, I participated in the conference “Genome Editing: Biomedical and Ethical Perspectives,” hosted by the Center for the Study of Bioethics at the University of Belgrade and cosponsored by the Division of Medical Ethics of NYU Langone Health and The Hastings Center. The prime minister of Serbia, Ana Brnabi?, spoke of the significance of bringing together an international community of bioethicists, acknowledging that ethical, social, and legal issues surrounding gene editing technologies transcend national boundaries. Europe's Oviedo Convention prohibits human germline gene editing, and UNESCO's Universal Declaration on the Human Genome and Human Rights says that germline editing “could be contrary to human dignity,” an assault on humanity itself. Whether one agrees or not, engaging with the idea forces us to think about what it means to be part of the global human community and about the moral significance of the human genome to creating that community. The conference highlighted for me how challenging having international, much less global, conversations about bioethics can be .     

Genetic Privacy,Disease Prevention,and the Principle of Rescue

Suppose that you have deeply personal information that you do not want to share. Further suppose that this information could help others, perhaps even saving their lives. Should you reveal the information or keep it secret? With the increasing prevalence of genetic testing, more and more people are finding themselves in this situation. Although a patient's genetic results are potentially relevant to all her biological family members, her first‐degree relatives—parents, children, and full siblings—are most likely to be affected. This is especially true for genetic mutations—like those in the BRCA1 and BRCA2 genes—that are associated with a dramatically increased risk of disease. Fortunately, people are usually willing to share results with their at‐risk relatives. Occasionally, however, a patient refuses to disclose her findings to anyone outside her clinical team. Ethicists have written little on patients’ moral duties to their at‐risk relatives. Moreover, the few accounts that have been advanced are problematic. Some unnecessarily expose patients’ genetic information to relatives who are unlikely to benefit from it, and others fail to ensure that patients’ most vulnerable relatives are informed of their genetic risks. Patients’ duty to warn can be defended in a way that avoids these problems. I argue that the duty to share one's genetic results is grounded in the principle of rescue—the idea that one ought to prevent, reduce, or mitigate the risk of harm to another person when the expected harm is serious and the cost or risk to oneself is sufficiently moderate. When these two criteria are satisfied, a patient will most likely have a duty to warn.     

Market Language,Moral Language

Those who advocate higher out‐of‐pocket spending, especially high deductibles, to keep health care costs better controlled without losing quality use market language to talk about how people should think about health care. Consumers—that is, patients—should hunt for bargains. Clip coupons. Shop around. Patients need to have more “skin in the game.” Consumer‐patients will then choose more carefully and prudently and use less unnecessary health care. Unfailingly, “skin” refers to having money at stake. Usually, those arguing for high deductibles express dismay or frustration that patients do not face the full (“true”) cost of the health services they receive. Unfortunately, a lack of price transparency, the need to unbundle bundled groups of services to discover total price, and the challenge of validly and reliably measuring and disclosing quality make shopping for health care a challenge for even the savviest patient. Urgency, fear, and sickness that impairs peak cognitive function and other aspects of emotionally laden decision‐making, even when “shared” with a physician, add obstacles to coupon clipping and tire kicking. Who has more at stake in health decisions than patients? Whose flesh is literally, not just figuratively, at risk?     

Pursued by happiness and beaten senseless. Prozac and the American dream

Since the publication of Listening to Prozac there have been many debates about how and why Prozac and other similar drugs are prescribed. The articles that follow take up debates about what conditions such drugs can and should address, questions about authenticity in using drugs for psychic well‐being, and concerns about what means we morally endorse in projects of self‐creation. The contributions from Carl Elliott, Peter Kramer, James Edwards, and David Healy derive from a project supported by the Social Sciences and Humanities Research Council of Canada, “Enhancement Technologies and Human Identity.” Psychiatry, like the Prozac it prescribes, aims to enhance the patient's internal psychic well‐being. Yet what ails many may be not an internal state like depression or anxiety, but alienation. And the experts of the self to whom we turn cannot “cure” our collective form of life in which alienation takes root.     

Personalized Medicine Is the Postgenomic Condition

When President Obama laid out his vision for the U.S. Precision Medicine Initiative in a 2016 Boston Globe op‐ed, he cautioned, “[I]t only works if we collect enough information first.” “Collecting information” is an apt way to describe the subject of both books reviewed here. Jenny Reardon's The Postgenomic Condition: Ethics, Justice, and Knowledge after the Genome traces the history of the Human Genome Project and efforts around the globe to obtain blood samples to extract not only genetic data but also meaning from them. Barbara Prainsack's Personalized Medicine: Empowered Patients in the 21st Century? concerns the capture of digital, quantifiable, and computable information about nearly all aspects of people's lives in the pursuit of personalized medicine. Reardon and Prainsack critique scientists’ and corporations’ appeals to liberal democracy, justice, and empowerment to collect more and more information about people. They reveal the limitations and frequent superficiality of those appeals and remind us that person‐centric ethics rather than data‐centric research is needed to realize a more democratic, just, and empowered society.     

Congee for the Soul

Provision of adequate nutrition to elderly patients who develop dysphagia after a stroke can be quite challenging, often leading to the placement of a percutaneous entero‐gastrostomy (PEG) tube for nutritional support. This hypothetical case describes the additional challenge of cross‐cultural belief that leads a daughter to provide oral feeding to her mother, an act that the medical team believes is dangerous and the daughter sees as salubrious. In this case, what is the proper balance between patient safety and deference to cultural traditions and norms? Where are the limits? Two commentaries offer insights for conflict resolution, including recommending that the medical team seek to understand the cultural motivations of the family, balancing safety and respect for cultural norms. The second commentary also disagrees with the team's presumption that the daughter's feeding of her mother is a greater threat to the patient than the PEG tube feeding is.     

Patients as Rights Holders

Autonomy and consent have been central values in Western moral and political thought for centuries. One way of understanding the bioethical models that started to develop, especially in the 1970s, is that they were about the fusion of a long‐standing professional ethics with the core values underpinning modern political institutions. That there was a need for this kind of fusion is difficult to dispute, especially since the provision of health care has in most developed countries become an ever more important concern of our political institutions, with governments playing a significant role in regulating and facilitating the provision of health care and in many countries even largely organizing it. There is, nevertheless, still room for dispute about how best to achieve this fusion and how to best think about autonomy and consent in a biomedical context. The simplest model we can have is probably about how being a person is largely about having the capacity of autonomous choice and that the main mode through which we exercise autonomy is by providing informed consent. Yet, liberal democracy's core idea that human beings have a high and equal value is also found in other accounts of the person. The human‐rights framework provides an alternative model for thinking about personhood and about patient care. The human‐rights approach is grounded, not in an account of autonomy (although it has something to say about autonomy), but in an account of the moral and political personhood that people possess merely by being human beings. In this approach, values like dignity and integrity, both highly relevant in a bioethical context, are identified as distinct values rather than being derived from and therefore reduced to respect for autonomous choice. The human‐rights approach can supplement the problematic notion of autonomy that has been central to bioethics by placing this notion in a broader, strongly pluralistic framework.     

The Intimate Responsibility of Surrogate Decision‐Making

Daniel Brudney's clear‐headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the (competent) patient has a right to decide because she is presumed to know her own interests better than anyone else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision‐making, it's intimacy, not knowledge, that does the heavy moral lifting.