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1.
J Med Ethics ; 50(10): 670-675, 2024 Sep 20.
Article in English | MEDLINE | ID: mdl-38749651

ABSTRACT

The idea of a 'right to mental integrity', sometimes referred to as a 'right against mental interference,' is a relatively new concept in bioethics, making its way into debates about neurotechnological advances and the establishment of 'neurorights.' In this paper, we interrogate the idea of a right to mental integrity. First, we argue that some experts define the right to mental integrity so broadly that rights violations become ubiquitous, thereby trivialising some of the very harms the concept is meant to address. Second, rights-based framing results in an overemphasis on the normative importance of consent, implying that neurointerventions are permissible in cases where people consent to have their mental states influenced or read off, a confidence in consent that we argue is misguided. Third, the concept often collapses the ethics of brain inputs and brain outputs, potentially resulting in a loss of important conceptual nuance. Finally, we argue that the concept of a right to mental integrity is superfluous-what is wrong with most violations of mental integrity can be explained by existing concepts such as autonomy, manipulation, privacy, bodily rights, surveillance, harm and exploitation of vulnerabilities. We conclude that bioethicists and policy-makers ought to either make use of these concepts rather than arguing for the existence of a new right, or they need to avoid making rights violations ubiquitous by settling on a narrower and more rigorous definition of the right.


Subject(s)
Human Rights , Informed Consent , Humans , Informed Consent/ethics , Personal Autonomy , Bioethics , Brain
2.
Am J Bioeth ; 24(1): 3-12, 2024 Jan.
Article in English | MEDLINE | ID: mdl-36635972

ABSTRACT

The concept of personhood has been central to bioethics debates about abortion, the treatment of patients in a vegetative or minimally conscious states, as well as patients with advanced dementia. More recently, the concept has been employed to think about new questions related to human-brain organoids, artificial intelligence, uploaded minds, human-animal chimeras, and human embryos, to name a few. A common move has been to ask what these entities have in common with persons (in the normative sense), and then draw conclusions about what we do (or do not) owe them. This paper argues that at best the concept of "personhood" is unhelpful to much of bioethics today and at worst it is harmful and pernicious. I suggest that we (bioethicists) stop using the concept of personhood and instead ask normative questions more directly (e.g., how ought we to treat this being and why?) and use other philosophical concepts (e.g., interests, sentience, recognition respect) to help us answer them. It is time for bioethics to end talk about personhood.


Subject(s)
Abortion, Induced , Bioethics , Pregnancy , Female , Animals , Humans , Personhood , Artificial Intelligence , Moral Obligations
3.
Am J Bioeth ; : 1-8, 2024 Jun 06.
Article in English | MEDLINE | ID: mdl-38842351

ABSTRACT

"Suffering" is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which "suffering" is invoked and analyze them in light of prominent theories of suffering. We then outline ethical hazards that arise as a result of imprecise usage of the concept and offer practical recommendations for avoiding them. Appeals to suffering are often getting at something ethically important. But this is where the work of ethics begins, not where it ends.

4.
Am J Bioeth ; : 1-13, 2024 Sep 17.
Article in English | MEDLINE | ID: mdl-39288291

ABSTRACT

Given the need for enforceable guardrails for artificial intelligence (AI) that protect the public and allow for innovation, the U.S. Government recently issued a Blueprint for an AI Bill of Rights which outlines five principles of safe AI design, use, and implementation. One in particular, the right to notice and explanation, requires accurately informing the public about the use of AI that impacts them in ways that are easy to understand. Yet, in the healthcare setting, it is unclear what goal the right to notice and explanation serves, and the moral importance of patient-level disclosure. We propose three normative functions of this right: (1) to notify patients about their care, (2) to educate patients and promote trust, and (3) to meet standards for informed consent. Additional clarity is needed to guide practices that respect the right to notice and explanation of AI in healthcare while providing meaningful benefits to patients.

5.
Camb Q Healthc Ethics ; : 1-14, 2024 Apr 11.
Article in English | MEDLINE | ID: mdl-38602092

ABSTRACT

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients' views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and "normalcy" in the context of OCD.

6.
J Med Ethics ; 2023 Nov 18.
Article in English | MEDLINE | ID: mdl-37979976

ABSTRACT

Rapid advancements in artificial intelligence and machine learning (AI/ML) in healthcare raise pressing questions about how much users should trust AI/ML systems, particularly for high stakes clinical decision-making. Ensuring that user trust is properly calibrated to a tool's computational capacities and limitations has both practical and ethical implications, given that overtrust or undertrust can influence over-reliance or under-reliance on algorithmic tools, with significant implications for patient safety and health outcomes. It is, thus, important to better understand how variability in trust criteria across stakeholders, settings, tools and use cases may influence approaches to using AI/ML tools in real settings. As part of a 5-year, multi-institutional Agency for Health Care Research and Quality-funded study, we identify trust criteria for a survival prediction algorithm intended to support clinical decision-making for left ventricular assist device therapy, using semistructured interviews (n=40) with patients and physicians, analysed via thematic analysis. Findings suggest that physicians and patients share similar empirical considerations for trust, which were primarily epistemic in nature, focused on accuracy and validity of AI/ML estimates. Trust evaluations considered the nature, integrity and relevance of training data rather than the computational nature of algorithms themselves, suggesting a need to distinguish 'source' from 'functional' explainability. To a lesser extent, trust criteria were also relational (endorsement from others) and sometimes based on personal beliefs and experience. We discuss implications for promoting appropriate and responsible trust calibration for clinical decision-making use AI/ML.

7.
Am J Bioeth ; 23(1): 12-24, 2023 01.
Article in English | MEDLINE | ID: mdl-36219208

ABSTRACT

While experience often affords important knowledge and insight that is difficult to garner through observation or testimony alone, it also has the potential to generate conflicts of interest and unrepresentative perspectives. We call this tension the paradox of experience. In this paper, we first outline appeals to experience made in debates about access to unproven medical products and disability bioethics, as examples of how experience claims arise in bioethics and some of the challenges raised by these claims. We then motivate the idea that experience can be an asset by appealing to themes in feminist and moral epistemology, distinguishing between epistemic and justice-based appeals. Next, we explain the concern that experience may be a liability by appealing to empirical work on cognitive biases and theoretical work about the problem of partial representation. We conclude with preliminary recommendations for addressing the paradox and offer several questions for future discussion.


Subject(s)
Bioethics , Humans , Morals , Feminism , Social Justice
8.
Am J Bioeth ; 23(10): 17-27, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37487184

ABSTRACT

In this paper, we contend with whether we still need traditional ethics education as part of healthcare professional training given the abilities of chatGPT (generative pre-trained transformer) and other large language models (LLM). We reflect on common programmatic goals to assess the current strengths and limitations of LLMs in helping to build ethics competencies among future clinicians. Through an actual case analysis, we highlight areas in which chatGPT and other LLMs are conducive to common bioethics education goals. We also comment on where such technologies remain an imperfect substitute for human-led ethics teaching and learning. Finally, we conclude that the relative strengths of chatGPT warrant its consideration as a teaching and learning tool in ethics education in ways that account for current limitations and build in flexibility as the technology evolves.

9.
Neuromodulation ; 26(8): 1646-1652, 2023 Dec.
Article in English | MEDLINE | ID: mdl-35088744

ABSTRACT

INTRODUCTION: Childhood dystonia is often nonresponsive to medications, and refractory cases are increasingly being treated with deep brain stimulation (DBS). However, many have noted that there is little consensus about when DBS should be offered, and there has been little examination of clinicians' decision-making process when determining whether to offer DBS for childhood dystonia. OBJECTIVES: This study aimed to identify and examine the factors considered by pediatric movement disorder specialists before offering DBS. MATERIALS AND METHODS: Semistructured interviews (N = 29) with pediatric dystonia clinicians were conducted, transcribed, and coded. Using thematic content analysis, nine central themes were identified when clinicians were asked about key factors, clinical factors, and psychosocial factors considered before offering pediatric DBS. RESULTS: Clinicians identified nine main factors. Five of these were classified primarily as clinical factors: early intervention and younger age (raised by 86% of respondents), disease progression and symptom severity (83%), etiology and genetic status (79%), clinicians' perceived risks and benefits of DBS for the patient (79%), and exhaustion of other treatment options (55%). The remaining four were classified primarily as psychosocial factors: social and family support (raised by 97% of respondents), patient and caregiver expectations about outcomes and understanding of DBS treatment (90%), impact of dystonia on quality of life (69%), and financial resources and access to care (31%). CONCLUSIONS: Candidacy determinations, in this context, are complicated by an interrelation of clinical and psychosocial factors that contribute to the decision. There is potential for bias when considering family support and quality of life. Uncertainty of outcomes related to the etiology of dystonia makes candidacy judgments challenging. More systematic examination of the characteristics and criteria used to identify pediatric patients with dystonia who can significantly benefit from DBS is necessary to develop clear guidelines and promote the well-being of these children.


Subject(s)
Deep Brain Stimulation , Dystonia , Dystonic Disorders , Child , Humans , Dystonia/diagnosis , Dystonia/therapy , Dystonia/etiology , Deep Brain Stimulation/adverse effects , Quality of Life , Treatment Outcome , Globus Pallidus , Dystonic Disorders/diagnosis , Dystonic Disorders/therapy , Dystonic Disorders/complications
10.
Am J Bioeth ; 22(6): 37-47, 2022 06.
Article in English | MEDLINE | ID: mdl-33620300

ABSTRACT

Patients who experience difficulty making medical decisions are often referred to as "ambivalent." However, the current lack of attention to the nuances between a cluster of phenomena that resemble ambivalence means that we are not always recognizing what is really going on with a patient. Importantly, different kinds of "ambivalence" may call for different approaches. In this paper, we present a taxonomy of ambivalence-related phenomena, provide normative analysis of some of the effects of-and common responses to-such mental states, and sketch some practical strategies for addressing ambivalence. In applying lessons from the philosophical literature and decision theory, our aim is to provide ethicists and clinicians with the tools to better understand and effectively intervene in cases of ambivalence.


Subject(s)
Decision Making , Humans
11.
Am J Bioeth ; 22(12): 10-21, 2022 12.
Article in English | MEDLINE | ID: mdl-34191681

ABSTRACT

In some views, philosophy's glory days in bioethics are over. While philosophers were especially important in the early days of the field, so the argument goes, the majority of the work in bioethics today involves the "simple" application of existing philosophical principles or concepts, as well as empirical work in bioethics. Here, we address this view head on and ask: What is the role of philosophy in bioethics today? This paper has three specific aims: (1) to respond to skeptics and make the case that philosophy and philosophers still have a very important and meaningful role to play in contemporary bioethics, (2) to discuss some of the current challenges to the meaningful integration of philosophy and bioethics, and (3) to make suggestions for what needs to happen in order for the two fields to stay richly connected. We outline how bioethics center directors, funders, and philosopher bioethicists can help.


Subject(s)
Bioethics , Humans , Philosophy , Ethicists , Dissent and Disputes
12.
AIDS Behav ; 24(7): 2054-2061, 2020 Jul.
Article in English | MEDLINE | ID: mdl-31900813

ABSTRACT

Many people living with HIV (PLWHIV) state that they would be willing to take significant risks to be "cured" of the virus. However, how they interpret the word "cure" in this context is not clear. We used a randomized survey to examine whether PLWHIV had a different willingness to take a hypothetical HIV medication if it causes flu-like symptoms, but provides: (a) cure, (b) remission that was labeled "cure", or (c) remission. PLWHIV (n = 454) were more willing to take a medication that provided a "cure" versus a "remission" if the side effects lasted less than 1 year. PLWHIV were more willing to take a medication that provided a remission that was labeled "cure" versus a "remission" (p = 0.01) if the side effects lasted 2 weeks. Clinicians and researchers should be aware of the impact of the word "cure" and ensure that PLWHIV fully understand the possible outcomes of their treatment options.


Subject(s)
Decision Making , HIV Infections/drug therapy , HIV Infections/psychology , Patients/psychology , Research Personnel/psychology , Drug Therapy/psychology , Female , Humans , Intention , Male , Middle Aged , Surveys and Questionnaires
13.
Brain Inj ; 34(3): 390-398, 2020 02 23.
Article in English | MEDLINE | ID: mdl-31880960

ABSTRACT

Objective: To explore the ways in which health care professionals and families understand terms and concepts associated with disorders of consciousness.Methods: Open-ended, semi-structured interviews were conducted with 20 health care professionals and 18 family caregivers affiliated with a disorders of consciousness program within a nationally ranked rehabilitation facility in the United States.Results: Analysis revealed that: (1) disagreement between some health care professionals and family caregivers regarding the presence of consciousness can arise due to differing beliefs about a patient experiencing pain, and differences in the length of time family caregivers spend with patients relative to clinical staff; (2) some health care professionals and family caregivers use nonclinical terms and concepts to describe consciousness; and (3) some family caregivers might attribute complex mental capacities to patients, which extend beyond the clinical evidence.Conclusion: The beliefs of health care professionals and families regarding disorders of consciousness are complex and could be influenced by broader psychological proclivities to "see minds" in patients who have a liminal neurological status. Awareness of these dynamics may assist health care professionals when interacting with family caregivers.


Subject(s)
Caregivers/psychology , Consciousness Disorders/psychology , Consciousness , Health Personnel/psychology , Patients/psychology , Family/psychology , Humans , Pain
14.
Camb Q Healthc Ethics ; 29(4): 557-573, 2020 10.
Article in English | MEDLINE | ID: mdl-32892777

ABSTRACT

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation (pDBS) has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children with refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand.


Subject(s)
Deep Brain Stimulation , Dystonia , Child , Dystonia/therapy , Globus Pallidus , Humans , Quality of Life , Treatment Outcome
15.
J Med Ethics ; 50(10): 655, 2024 Sep 20.
Article in English | MEDLINE | ID: mdl-39304296
19.
J Med Ethics ; 49(8): 525, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37487621
20.
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