Select PublicationsShared Decision-Making in Palliative Care: A Maternalistic Approach.
Laura Specker Sullivan, Mary Adler, Joshua Arenth, Shelly Ozark, Leigh Vaughan|Narrative Inquiry in Bioethics 11(2): Pre-Print 2021. During goals of care conversations, palliative care clinicians help patients and families determine priorities of care and align medical care with those priorities. The style and methods of communicating with families and negotiating a care plan can range from paternalistic to entirely patient driven. In this paper, we describe a case in which the palliative care clinician approached decision-making using a paradigm that is intuitive to many clinicians and which seems conceptually sound, but which has not been fully explored in the bioethics literature. This paradigm, termed maternalism, allows the clinician to direct decision-making within a relationship such that best interests and autonomy are mutually reinforced, thus reflecting relational autonomy as opposed to individual autonomy. We explore whether this method is appropriate in this case and explain how it captures significant ethical features of the case that might be missed by other approaches. More Than Consent for Ethical Open Label Placebo Research. Laura Specker Sullivan| Journal of Medical Ethics Pre-Print 2020. *Winner of the 2020 Mark S. Ehrenreich Prize for Healthcare Ethics Research for the North America Region. Recent studies have explored the effectiveness of open-label placebos (OLPs) for a variety of conditions, including chronic pain, cancer-related fatigue and irritable bowel syndrome. OLPs are thought to sidestep traditional ethical worries about placebos because they do not involve deception: with an OLP, patients or subjects are told outright that they are not given an active substance. As deception is framed as the primary hurdle to ethical placebo use, the door is ostensibly opened to ethical studies of OLPs. In this article, I suggest that even though OLPs seemingly do not involve deception, there are other ethical considerations in their clinical investigation and subsequent use. Research ethics often focusses on informed consent—of which, deception and honesty are a piece—as a means to justify research practices with human subjects. Yet, it is but one of the ethical considerations that should be taken into account. With research into placebo effects in particular, I argue that the history of clinical placebo use grounds special considerations for OLP research that go beyond respect for the autonomy of individual patients through informed consent and encompass structural concerns about the type of patient for whom a placebo has historically been thought appropriate. Trust, Risk, and Race in American Medicine. Laura Specker Sullivan| Hastings Center Report 50(1):18-26, 2020. There is ample evidence that patient mistrust toward the American medical system is to some extent associated with communal and individual experiences of racism. For groups who have faced exploitation and discrimination at the hands of physicians, the medical profession, and medical institutions, trust is a tall order and, in many cases, would be naive. Nevertheless, trust is often regarded as a central feature of the physician‐patient relationship. In this article, I draw on empirical research, ethical theory, and clinical cases to propose one way that providers might address and, ideally, resolve mistrust when it arises in an immediate case. I describe how medical mistrust has been characterized empirically within medical and bioethics scholarship, and I provide an overview of theories of trust, arguing that they may be unable to account for the risks that providers must take in seeking to establish trust within many American medical institutions. Common assumptions in medical and bioethical scholarship on trust notwithstanding, caring and competence are not always enough to establish a trusting relationship between physician and patient. I suggest that, in an atmosphere of mistrust, comprehension of the existence and source of suspicion is essential to effective signaling of trustworthiness. Special Section of the International Journal of Feminist Approaches to Bioethics: "Feminist Approaches to Neuroethics," co-editor with Sara Goering. Volume 13, Issue 1. Digital Wellness and Persuasive Technologies. Laura Specker Sullivan and Peter Reiner| Philosophy and Technology (Online First) 2019. The development of personal technologies has recently shifted from devices that seek to capture user attention to those that aim to improve user well-being. Digital wellness technologies use the same attractive qualities of other persuasive apps to motivate users towards behaviors that are personally and socially valuable, such as exercise, wealth-management, and meaningful communication. While these aims are certainly an improvement over the market-driven motivations of earlier technologies, they retain their predecessors’ focus on influencing user behavior as a primary metric of success. Digital wellness technologies are still persuasive technologies, and they do not evade concerns over whether their influence on users is ethically justified. In this paper, we describe several ethical frameworks with which to assess the justification of digital wellness technologies’ influence on users. We propose that while some technologies help users to complete tasks and satisfy immediate preferences, other technologies encourage users to reflect on the values underlying their habits and teach them to evaluate their lives’ competing demands. While the former approach to digital wellness technology is not unethical, we propose that the latter approach is more likely to lead to skillful user engagement with technology. Insight and the No-Self in Deep Brain Stimulation. Laura Specker Sullivan| Bioethics 33(4):487-494, 2019. Ethical analyses of the effects of neural interventions commonly focus on changes to personality and behavior, interpreting these changes in terms of authenticity and identity. These phenomena have led to debate among ethicists about the meaning of these terms for ethical analysis of such interventions. While these theoretical approaches have different criteria for ethical significance, they agree that patients' reports are concerning because a sense of self is valuable. In this paper, I question this assumption. I propose that the Buddhist theory of no-self offers a novel approach to making ethical sense of patients' claims following deep brain stimulation. This alternative approach is based on the value of insight into patterns of cause and effect among mental states and actions. Nishida Kitarō’s Kōiteki Chokkan: Active Intuition and Contemporary Metaethics. Laura Specker Sullivan|Comparative Metaethics: Neglected Perspectives on the Foundation of Morality, Colin Marshall ed. Routledge Press. 2019. Relational Autonomy, Paternalism, and Maternalism. Laura Specker Sullivan and Fay Niker| Ethical Theory and Moral Practice 21(3): 649-667, 2018. The concept of paternalism is intricately tied to the concept of autonomy. It is commonly assumed that when paternalistic interventions are wrong, they are wrong because they impede individuals’ autonomy. Our aim in this paper is to show that the recent shift towards conceiving of autonomy relationally highlights a separate conceptual space for a nonpaternalistic kind of interpersonal intervention termed maternalism. We argue that maternalism makes a twofold contribution to the debate over the ethics of interpersonal action and decision-making. Descriptively, it captures common experiences that, while not unusual in everyday life, are largely absent from the present discussion. Normatively, it describes a type of intervention with justification conditions distinct from the standard framework of paternal- ism. We explicate these contributions by describing six key differences between maternalism and paternalism, and conclude by anticipating and responding to potential objections. Pure Experience and Disorders of Consciousness. Laura Specker Sullivan| American Journal of Bioethics-Neuroscience 9(2): 107-114, 2018. The presence or absence of consciousness is the linchpin of taxonomy for disorders of consciousness (DOCs), as well as a focal point for end-of-life decision making for patients with DOCs. Focus on consciousness in this latter context has been criticized for a number of reasons, including the uncertainty of the diagnostic criteria for consciousness, the irrelevance of some forms of consciousness for determining a patient’s interests, and the ambiguous distinction between consciousness and unconsciousness. As a result, there have been recent suggestions that perhaps consciousness ought not to play the focal role that it does in decision making for persons with DOCs, and that other considerations, such as patient and family values, ought to take center stage. In this article, I take a step back and reexamine the meaning of consciousness in the DOC taxonomy. I propose that, while consciousness in DOC taxonomy is defined as “wakeful awareness,” this definition, while clinically expedient, occasions ethical misunderstanding. Using resources from non-Western philosophy of mind, I argue that the form of consciousness that is ethically relevant in DOCs is intransitive, or pure. I contrast this pure experience with transitive consciousness to highlight why ethical conclusions ought not define consciousness solely as “wakeful awareness,” even if clinical criteria do. What Does a Definition of Death Do? Laura Specker Sullivan| Diametros 55: 63-67, 2018. Trusting Relationships and the Ethics of Interpersonal Action. Fay Niker and Laura Specker Sullivan| International Journal of Philosophical Studies 26(2): 173-186, 2018. *Runner-up for the 2017 Robert Papazian Prize Trust has generally been understood as an intentional mental phenomenon that one party (the truster) has towards another party (the trusted) with respect to some object of value for the truster. In the landmark work of Annette Baier, this trust is described as a three-place predicate: A entrusts B with the care of C, such that B has discretionary powers in caring for C. In this paper we propose that, within the context of thick interpersonal relationships, trust manifests in a different way: as a property of the relationship itself. We argue that this conceptualization has important implications for the debate over the ethics of interpersonal interventions. In particular, when trust is understood in this way, actions that would otherwise be deemed morally troubling may be permissible, or even morally desirable, on account of their role in strengthening trusting relationships. Have Your Momos and Eat Them, Too. Laura Specker Sullivan | Science: 359(6373): 284, January 2018. Ethics in Published Brain Computer Interface Research. Laura Specker Sullivan and Judy Illes | Journal of Neural Engineering 15(1):013001, 2018. Neuroethics in Asia. Fukushi, T., Isobe, T., Nakazawa, E., Takimoto, Y., Akabayashi, A., Specker Sullivan, L. and Sakura, O. | The Handbook of Neuroethics, edited by Karen Rommelfanger and L. Syd Johnson. Routledge 2018. Four Ethical Priorities for Neurotechnologies and AI. Rafa Yuste, Sara Goering... Laura Specker Sullivan, et al. (25 co-authors.) | Nature 551: 159-163, November 2017. Changing the Conversation: A Capabilities Approach to Disordered Consciousness (Open Peer Commentary). Christos Lazaridis, Laura Specker Sullivan, Peter Koch, and Sunil Kothari | American Journal of Bioethics Neuroscience 8(3): 149-151, October 2017. Keeping Disability in Mind: A Case Study in Implantable Brain-Computer Interface Research. Laura Specker Sullivan, Eran Klein, Tim Brown, Matthew Sample, Michelle Pham, Paul Tubig, Raney Folland, and Sara Goering | Science and Engineering Ethics 24: 479-504: 2018. Brain-Computer Interface (BCI) research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design (UCD). The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers' experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome (or even encourage) end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is "good enough" for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering. Relational Autonomy, Maternalism, and the Nocebo Effect (Open Peer Commentary). Laura Specker Sullivan and Fay Niker | American Journal of Bioethics 17(6): June 2017. Dynamic Axes of Informed Consent in Japan. Laura Specker Sullivan | Social Science and Medicine 174: 159-168, February 2017. Scholarship in cross-cultural bioethics routinely frames Japanese informed consent in contrast to informed consent in North America. This contrastive analysis foregrounds cancer diagnosis disclosure and physician paternalism as unique aspects of Japanese informed consent that deviate from American practices. Drawing on in-depth interviews with 15 Japanese medical professionals obtained during fieldwork in Japan from 2013 to 15, this article complicates the informed consent discourse beyond East-West comparisons premised on Anglo-American ethical frameworks. It expands professional perspectives to include nurses, medical social workers, clinical psychologists, and ethicists and it addresses informed consent for a broad range of conditions in addition to cancer. The results suggest that division of affective labor is an under-theorized dimension of informed consent that is perceived as at odds with principled demands for universal informed consent. These practical tensions are conceptualized as cultural differences, with Japan identified in terms of omakase as practical and supportive and the United States identified in terms of jiko kettei as principled and self-determining. These results have implications for the methodology of cross-cultural bioethics as well as for theories and practices of informed consent in both Japan and the United States. I conclude that responsible cross-cultural work in bioethics must begin from the ground up, incorporating all relevant stakeholder perspectives, attitudes, and experiences. Models of Engagement in Neuroethics Programs: Past, Present, and Future. Laura Specker Sullivan and Judy Illes | Debates About Neuroethics: Perspectives on the Field’s Development, Focus, and Future, edited by Eric Racine and John Aspler. Springer, Advances in Neuroethics Series 2017. Beyond 'Communication and Control': Towards Ethically Complete Rationales for Brain Computer Interface Research. Laura Specker Sullivan and Judy Illes | Brain-Computer Interfaces 3(3): 156-163, August 2016 Medical Maternalism: Beyond Paternalism and Antipaternalism. Laura Specker Sullivan | Journal of Medical Ethics 42(7): 439-444, July 2016 This paper argues that the concept of paternalism is currently overextended to include a variety of actions that, while resembling paternalistic actions, are importantly different. I use the example of Japanese physicians’ non-disclosures of cancer diagnoses directly to patients, arguing that the concept of maternalism better captures these actions. To act paternalistically is to substitute one's own judgement for that of another person and decide in place of that person for his/her best interest. By contrast, to act maternalistically is to decide for another person based on a reasonable understanding of that person's own preferences. The concept of maternalism allows for a more thorough assessment of the moral justification of these types of actions. I conclude that it is possible, at least in principle, to justify Japanese physicians’ non-disclosures, and that this justification must be based on an understanding of these actions as maternalistic. Uncovering Metaethical Assumptions in Bioethical Discourse Across Cultures. Laura Specker Sullivan | Kennedy Institute of Ethics Journal 26(1): 47-78, March 2016 Much of bioethical discourse now takes place across cultures. This does not mean that cross-cultural understanding has increased. Many cross-cultural bioethical discussions are marked by entrenched disagreement about whether and why local practices are justified. In this paper, I argue that a major reason for these entrenched disagreements is that problematic metaethical commitments are hidden in these cross-cultural discourses. Using the issue of informed consent in East Asia as an example of one such discourse, I analyze two representative positions in the discussion and identify their metaethical commitments. I suggest that the metaethical assumptions of these positions result from their shared method of ethical justification: moral principlism. I then show why moral principlism is problematic in cross-cultural analyses and propose a more useful method for pursuing ethical justification across cultures. Do Implanted Brain Devices Threaten Autonomy or the 'Sense' of Autonomy? (Open Peer Commentary). Laura Specker Sullivan | American Journal of Bioethics Neuroscience 6(4): 24-26, November 2015 The Self-Contradictory Identity of the Personal Self: Nishida's Argument Against Kantian Pure Practical Reason. Laura Specker Sullivan | Journal of Japanese Philosophy 2(1): 33-56, November 2014 Throughout his entire career, Nishida Kitarō was, arguably, interested in challenging Immanuel Kant’s formulation of the moral will. In his first work, An Inquiry into the Good, he criticizes Kant’s pure practical reason as idealistic, arguing that the good should be understood not in terms of an abstract, formal relation of reason with itself, but in terms of personality as a single, unique, unifying power that is the true reality of the self. He echoes this language in his last work, “The Logic of the Place of Nothingness and the Religious Worldview,” proposing that the personal self exists as a self-determining individual through creative expression. This article will investigate how Nishida’s development of this concept of the personal self grounds his proposal that the goal of the moral will is realization of the good as a personal, rather than abstract, ideal, through the intentional action of active intuition. Dogen and Wittgenstein: Transcending Language Through Ethical Practice. Laura Specker Sullivan | Asian Philosophy 3: 221-235, June 2013 While there have been numerous claims of a resemblance between the philosophy of Ludwig Wittgenstein and Zen Buddhism, few studies of the philosophy of Wittgenstein in detailed comparison with specific Zen thinkers have emerged. This article attempts to fill this gap by considering Wittgenstein's philosophy in relation to that of Eihei Dōgen, founder of the Sōtō school of Zen. Points of particular confluence are found in both thinkers’ approaches to language, experience, and practice. Through an elucidation of these points, this article argues that both Dōgen and Wittgenstein can be understood as putting forth a philosophy of transcendent ethics. |
Recent and Upcoming PresentationsSociety for Applied Philosophy Annual Conference, July 2021.
Pediatric Ethics in the Shadow of COVID Symposium, Children's Mercy Bioethics Center, May 2021. "Who Takes on the Risk? Trust and Race in American Medicine," UPMC Grand Rounds, December 2020. The Normativity & Epistemology of Friendship, September 2020 World Congress of Bioethics and Feminist Approaches to Bioethics, June 2020 |