Following the “control dilemma” of Collingridge, influencing technological developments is easy when their implications are not yet manifest, yet once we know these implications, they are difficult to change. This article revisits the Collingridge dilemma in the context of contemporary ethics of technology, when technologies affect both society and the value frameworks we use to evaluate them. Early in its development, we do not know how a technology will affect the value frameworks from which it will be evaluated, while later, (...) when the implications for society and morality are clearer, it is more difficult to guide the development in a desirable direction. Present-day approaches to this dilemma focus on methods to anticipate ethical impacts of a technology, being too speculative to be reliable, or on ethically regulating technological developments, discarding anticipation of the future implications. We present the approach of technological mediation as an alternative that focuses on the dynamics of the interaction between technologies and human values. By investigating online discussions about Google Glass, we examine how people articulate new meanings of the value of privacy. This study of “morality in the making” allows developing a modest and empirically informed form of anticipation. (shrink)

The field of Neuro-Engineering seems to be on the fast track towards accomplishing its ultimate goal of potentially replacing the nervous system in the face of disease. Meanwhile, the patients and professionals involved are continuously dealing with human bodily experience and especially how neuro-engineering devices could become part of a user’s body schema: the domain of ‘embodied phenomenology’. This focus on embodiment, however, is not sufficiently reflected in the current literature on ethical and philosophical issues in neuro-engineering. In this article (...) we will focus on this lacuna by explaining existing data on neuro-engineering user’s experiences by using phenomenological concepts such as transparency and the concepts that may facilitate this: functionality, sensorimotor feedback and affective tolerance. By introducing and applying these concepts to four real life case examples, we will discuss practical implications and guidelines which can contribute to the actual success of incorporation of the device by the patient. First, we will discuss the importance of a ‘Patient Preference Diagnosis’, which can serve as a way to prepare the patient for the existential reorientation involved in the process. In addition, a Patient Transparency Diagnosis during and after such a process is also relevant when wanting to provide the medical field in general with feedback, and the patient in particular with possibilities to fine-tune the device. From these practical guidelines we will conclude that the phenomenological approach can be very valuable when applied to the field of neuro-engineering. (shrink)

Rapid advancements in human neuroscience and neurotechnology open unprecedented possibilities for accessing, collecting, sharing and manipulating information from the human brain. Such applications raise important challenges to human rights principles that need to be addressed to prevent unintended consequences. This paper assesses the implications of emerging neurotechnology applications in the context of the human rights framework and suggests that existing human rights may not be sufficient to respond to these emerging issues. After analysing the relationship between neuroscience and human rights, (...) we identify four new rights that may become of great relevance in the coming decades: the right to cognitive liberty, the right to mental privacy, the right to mental integrity, and the right to psychological continuity. (shrink)

In this article, we explore how deep brain stimulation (DBS) devices designed to “close the loop”—to automatically adjust stimulation levels based on computational algorithms—may risk taking the individual agent “out of the loop” of control in areas where (at least apparent) conscious control is a hallmark of our agency. This is of particular concern in the area of psychiatric disorders, where closed-loop DBS is attracting increasing attention as a therapy. Using a relational model of identity and agency, we consider whether (...) DBS designed for psychiatric regulation may require special attention to agency. To do this, we draw on philosophical work on relational identity and agency, connecting it with reports from people using first-generation DBS devices for depression and obsessive-compulsive disorder. We suggest a way to extend a notion of relational agency to encompass neural devices. (shrink)

This paper focuses on invasive therapeutic procedures, defined as procedures requiring the introduction of hands, instruments, or devices into the body via incisions or punctures of the skin or mucous membranes performed with the intent of changing the natural history of a human disease or condition for the better. Ethical and methodological concerns have been expressed about studies designed to evaluate the effects of invasive therapeutic procedures. Can such studies meet the same standards demanded of those, for example, evaluating pharmaceutical (...) agents? This paper describes a research project aimed at examining the interplay and sometimes apparent conflict between ethical standards for human research and standards for methodological rigor in trials of invasive procedures. The paper discusses how the authors plan to develop a set of consensus standards that, if met, would result in substantial and much-needed improvements in the methodological and ethical quality of such trials. (shrink)

In this paper I explore systematically the relationship between Brain-Computer Interfaces (BCIs) and their human users from a phenomenological and cognitive perspective. First, I functionally decompose BCI systems and develop a typology in which I categorize BCI applications with similar functional properties into three categories, those with (1) motor, (2) virtual, and (3) linguistic applications. Second, developing and building on the notions of an embodied tool and cognitive tool, I analyze whether these distinct BCI applications can be seen as bodily (...) or cognitive extensions. Contrary to some recent philosophical claims, I will argue that, although BCI technology may have the potential to become bodily and cognitive extensions for skilled users, at this stage they are not. And while the electrodes may to a variable degree be transparent and incorporated in the body schema, the BCI system as a whole is not. Moreover, BCIs do not have a functional role characteristic for cognition and are therefore not cognitive extensions. Third, based on concepts from the distributed cognition framework, I give a number of suggestions to improve the interface design of linguistic applications, i.e. BCIs that allow its user to spell words by selecting letters on a screen. These suggestions may result in cognitive extension and would enhance the autonomy and quality of life of its users. In sum, in this paper I develop a typology, analysis and critique on the current philosophical debate on BCIs, thereby providing a richer conceptual understanding of BCI systems which allows me to offer some suggestions for improving the interface design of linguistic applications. (shrink)

Virtue is the most perdurable concept in the history of ethics, which is understandable given the ineradicability of the moral agent in the events of the moral life. Historically, virtue enjoyed normative force as long as the philosophical anthropology and the metaphysics of the good that grounded virtue were viable. That grounding has eroded in both general and medical ethics. If virtue is to be restored to a normative status, its philosophical underpinnings must be reconstructed. Such reconstruction seems unlikely in (...) general ethics, where the possibility of agreement on the good for humans is remote. However, it is a realistic possibility in the professional ethics of the health professions where agreement on the telos of the healing relationship is more likely to arise. Nevertheless, virtue-based ethics must be related conceptually and normatively to other ethical theories in a comprehensive moral philosophy of the health professions. (shrink)

Implanted medical devices—for example, cardiac defibrillators, deep brain stimulators, and insulin pumps—offer users the possibility of regaining some control over an increasingly unruly body, the opportunity to become part “cyborg” in service of addressing pressing health needs. We recognize the value and effectiveness of such devices, but call attention to what may be less clear to potential users—that their vulnerabilities may not entirely disappear but instead shift. We explore the kinds of shifting vulnerabilities experienced by people with Parkinson’s disease (PD) (...) who receive therapeutic deep brain stimulators to help control their tremors and other symptoms of PD. (shrink)

The relation between the notions of (medical) invasiveness and (actual or potential) harm has not been systematically discussed nor theoretically grounded, despite its importance to clinical-ethical practice. This paper aims to clarify the notion of invasiveness beyond the traditional notion of invasiveness as breaking skin or inserting mechanical objects into the body. The traditional notion of invasiveness is challenged by counterexamples. Three approaches to the notion of disorder applied here are: deviation from what is common; deviation from what is considered (...) ideal; and disruption of self-organization. Assuming that more extreme measures are related to more harm, all three approaches to the notion of disorder suggest that invasiveness is proportional if not identical to harm, and show no clear relation to the traditional notion of invasiveness. In conclusion, the notion of invasiveness may best be eliminated from medical terminology, replacing it with a detailed understanding of the notion of harm. (shrink)

Seen as contributing to human enhancement, implanted technologies have recently been receiving a lot of attention. However, reflections on these technologies have taken the shape of rather speculative ethical judgments on “hyped” technological devices. On the other hand, while science and technology studies and philosophy of technology have a long tradition of analyzing how technological artifacts and tools transform and configure our lives, they tend to focus on use configurations rather than the intimate relations brought about by implanted technologies. Even (...) the cyborg has lost some of its hermeneutic power as it has been detached from its material grounds, becoming a discursive entity. In this article, I reclaim the importance of materiality and explore how people live with spinal cord stimulation, which is a type of neuromodulation technology. Implanted in bodies and seemingly out of sight, this technology does not cease to matter. Embodiment and incorporation are crucial for people to live well with SCS. Embodying the neuromodulation technology entails groping processes in which gestures are central and an increased intimacy with one’s bodily materiality. Incorporating it is highly relational and entangled with the bodies of loved and distant ones, humans and nonhumans. (shrink)

The vulnerability of patients receiving significantly innovative neurosurgical procedures, either as research or as non-standard therapy, presents particularly potent challenges for those attempting to substantially advance clinical Neurosurgical practice in the most ethically and efficacious manner. This beginning formulation has built into it several important notions about research participation, balancing values, and clinical advancement in the context of neurological illness. For the time being, allow vulnerability to act as a placeholder for circumstances or states of being wherein the established checks (...) and balances of power and interest are no longer sufficient in promoting the just treatment of persons. Further, the phrase to substantially advance Neurosurgical practice encompasses radical innovation as well as significant research into new procedures. Finally, few of these explorations involve true randomized placebo controlled trials, but rather they enroll patients rightfully hoping for some benefit by means of undergoing the procedure.When a neurosurgeon asks me, as an ethicist, to meet with a patient who has medically refractory disease and no good standard therapy options remaining, he is asking for help concerning whether to offer, as a last chance, an unproven therapy as either innovation or research. (shrink)

Phenomenology has a rich tradition of interpreting technology, medicine, and the life sciences. It has not yet had much to say about the medical devices which have always been central to bioethics. In this chapter, I outline what is meant by medical devices, and connect the sense of intention in made-object design with the notion of intentionality in phenomenology. I survey three basic ways of characterising medical devices grounded in the phenomenological literature: Albert Borgmann’s device paradigm, Don Ihde’s human-machine relations, (...) and Merleau-Ponty’s body-subject. Engaging with these approaches could help bring to analyses of medical devices the uniquely whole-of-context view of which phenomenology is capable, and better inform all stakeholders about their phenomenal consequences. (shrink)

Deep brain stimulation interventions are novel devices being investigated for the management of severe treatment-resistant psychiatric illnesses. These interventions require the invasive implantation of high-frequency neurostimulatory probes intracranially aiming to provide symptom relief in treatment-resistant disorders including obsessive-compulsive disorder and anorexia nervosa. In the scientific literature, these neurostimulatory interventions are commonly described as reversible and to be used as a last resort option for psychiatric patients. However, the ‘last resort’ status of these interventions is rarely expanded upon. Contrastingly, usages of (...) DBS devices for neurological symptoms have paved the way for established safety and efficacy standards when used earlier in a disease’s timeline. As DBS treatments for these neurological diseases progress to have earlier indications, there is a parallel ethical concern that early implementation may one day become prescribed for psychiatric illnesses. The purpose of this article is to build off contemporary understandings of reversible neurostimulatory interventions to examine and provide clarifications on the ‘last resort’ status of DBS to better address its ethically charged use in psychiatric neurosurgery. To do this, evaluative differences between DBS treatments will be discussed to demonstrate how patient autonomy would be a paramount guiding principle when one day implementing these devices at various points along a psychiatric disease’s timeline. In presenting the clarification of ‘last resort’ status, the ethical tensions of early DBS interventions will be better understood to assist in providing psychiatric patients with more quality of life years in line with their values. (shrink)

Deep brain stimulation (DBS) has in some cases been associated with significant psychological effects and/or personality change. These effects occur sometimes as acute changes experienced intraoperatively or during the initial setting of the stimulator and sometimes as longer term progressive changes in the months following surgery. Sometimes they are the intended outcome of treatment, and in other cases they are an unintended side-effect. In all of these circumstances some patients and caregivers have described the psychological effects of DBS as frightening (...) or disconcerting. I trace the source of these negative reactions to the fear that stimulation-related psychological and personality changes represent a threat to personal identity and agency. This issue has implications both for philosophical theories of personal identity and agency and for clinical concerns. A narrative account of personal identity is developed to illuminate the nature of the threat to identity and agency DBS potentially poses, and to suggest steps that might be taken to mitigate and avoid these threats. (shrink)

This article explores the notion of the dislocated self following deep brain stimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected or trivially true. (...) The claim is false insofar as it misunderstands the dynamic nature of identity formation. The claim is misdirected at DBS insofar as the real threat to personal identity is the discriminatory attitudes of others towards persons with motor and other disabilities. The claim is trivially true insofar as any dramatic event or experience integrated into one’s identity-constituting narrative could then potentially be described as threatening. From the perspective of relational personal identity, when DBS dramatically disrupts the narrative flow, this disruption is best examined through the lens of agency. For illustrative purposes, the focus is on DBS for the treatment of Parkinson’s disease. (shrink)

A basic question of medical ethics is whether the norms governing medical practice should be understood as the application of principles and rules of the common morality to medicine or whether some of these norms are internal or proper to medicine. In this article we describe and defend an evolutionary perspective on the internal morality of medicine that is defined in terms of the goals of clinical medicine and a set of duties that constrain medical practice in pursuit of these (...) goals. This perspective is developed by means of a critical examination of the essentialist conception of the internal morality of medicine advocated by Edmund Pellegrino and the critique of internal morality approaches by Robert Veatch and Tom Beauchamp. (shrink)

According to a standard view, the physical boundary of the person—the skin-and-skull boundary—matters morally because this boundary delineates between where the person begins and the world ends. On the basis of this view we make a distinction between invasive interventions that penetrate this boundary and non-invasive interventions that do not. The development of neuroprosthetics, however, raises questions about the significance of this boundary and the relationship between person and body. In particular it has been argued by appeal to the Extended (...) Mind thesis that mind and person can extend beyond the body, and hence the skin-and-skull boundary is of questionable significance. In this paper I argue that the Extended Mind thesis is consistent with the ethical relevance of the skin-and-skull barrier. Although it can be argued that cognitive processes and aspect of mind can extend beyond the skin-and-skull boundary as EM claims, it does not follow that the person is also extended beyond this boundary. The moral sense of person is closely related to the notion of person as a subject of experiences and this, in turn, is related to the sensory and somatosensory aspects of the body. The development of neuroprosthetics provides us with reason to see that persons can be variously embodied, but this is consistent with the functional and ethical significance of the skin-and-skull boundary. (shrink)

Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently (...) impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population. (shrink)

This article deals with the euthanasia debate in light of new life-sustaining technologies such as the left ventricular assist device (LVAD). The question arises: does the switching off of a LVAD by a doctor upon the request of a patient amount to active or passive euthanasia, i.e. to ‘killing’ or to ‘letting die’? The answer hinges on whether the device is to be regarded as a proper part of the patient's body or as something external. We usually regard the switching (...) off of an internal device as killing, whereas the deactivation of an external device is seen as ‘letting die’. The case is notoriously difficult to decide for hybrid devices such as LVADs, which are partly inside and partly outside the patient's body. Additionally, on a methodological level, I will argue that the ‘ontological’ arguments from analogy given for both sides are problematic. Given the impasse facing the ontological arguments, complementary phenomenological arguments deserve closer inspection. In particular, we should consider whether phenomenologically the LVAD is perceived as a body part or as an external device. I will support the thesis that the deactivation of a LVAD is to be regarded as passive euthanasia if the device is not perceived by the patient as a part of the body proper. (shrink)

Tube feeding is often presented as a nearly risk free and beneficial treatment for patients with dementia. But evidence shows that its benefits are illusory, while its risks are greater than many realize. Assisted oral feeding and good hospice care are better options.

Though many argue over root causes, few dispute the existence of gender disparities across our societal landscape. Patriarchal norms consistently obstruct the flourishing of those who identify themselves as women, those who are identified by others as women, and generally those who gender-identify in ways that challenge the norms of heterosexual cis-gender male privilege. Acknowledging the limits of our analysis, here we focus on some of the disparities faced by women in particular.1 From the persistent wage gap despite women's steadily (...) increasing participation in the workforce, to the perplexing paucity of women occupying C-suite positions in business or tenured professorships in academia despite efforts to... (shrink)