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Diagnosing, treating, and caring for individuals with dementia-related syndroms raises unique legal and ethical questions. Individuals with dementia may be more likely to lack decision-making capacity. Additionally, along with their families, individuals with dementia will face complicated health care related decisions – complicated by limited therapy options. This chapter identifies key legal and ethical questions that come up in the clinical and non-clinical setting relevant to dementia-related syndromes.
Aerial lidar (light detection and ranging) has been hailed as a revolutionary technology in archaeological survey because it can map vast areas with high-precision and seemingly peer beneath forest cover. This excitement has led to a proliferation of lidar scans, including calls to map the entire land surface of earth. Highlighting how the growth of aerial lidar is tied to fast capitalism, this article seeks to temporarily pause the global rush for data collection/extraction by focusing on the ethical dilemmas of remotely scanning Indigenous homelands and heritage. Although lidar specialists must obtain federal permissions for their work, few engage with people directly in the path of their scans or descendant stakeholders. This oversight perpetuates colonial oppression by objectifying Indigenous descendants. To address Indigenous objectification, I argue that aerial lidar mapping should be preceded by a concerted, culturally sensitive effort to obtain informed consent from local and descendant groups. With the Mensabak Archaeological Project as a case study, I demonstrate how aerial lidar can become part of a collaborative, humanizing praxis.
Under the rule of law, everyone has a constitutional right to a remedy—that is, access to a court that decides a dispute over private rights and obligations according to the law of the land. Dispute resolution agreements are an instance of reflexive contracting, in other words, agreements on which substantive and procedural rules shall govern a contractual relationship. Where the choice for one or both parties is for a law or forum other than that applicable by default, dispute resolution agreements contain a waiver of the constitutional right to a remedy according to the law of the land. Party autonomy—that is, the freedom to contract on the rights and remedies applicable to the main contract—is conferred by reflexive contract law, that is, the law applicable to dispute resolution agreements. In this article I argue that reflexive contract law, in specifying the conditions under which reflexive contracts are enforced by the state, shall reflect the extent to which agreements to arbitrate, on forum selection, or on choice of law interfere with the constitutional right to a remedy. Coherent requirements as to the form and validity of consent, ex-ante information, or ex-post judicial control shall be proportional to the entailed dangers and the proficiency of the involved parties. However, as dispute resolution agreements are regulated by diverse instruments on the national, supranational, and international levels, consistency is very difficult to achieve. Moreover, the US and EU regulatory approaches regarding the protection of consumers and employees seem to be incommensurable.
You can sell your soul to the devil, but it would be especially devilish if the sale were hidden on page twenty-nine of the terms of service of a ride sharing app. Our world is full of contract text for which there are no readers, allowing term setters the unilateral power to make law. There are two ways to approach this problem: providing more information, better information or more salient information on contract terms—information model—or controlling the content of the terms of form contracts—control model. This Article explores the interplay between the information model and the control model for protection of recipients of standard form contracts. It argues that the control model and the information model are mutually exclusive from a conceptual point of view. Therefore, using information to protect consumers should be eschewed in favor of term control – we should say farewell to the information model. This would mean that, given strong court control, contract terms could be set without notice, possibility to review or assent to them. Where court control is weak it should be strengthened. This Article develops these arguments with a view to the European and U.S. discourse on standard form contracts.
This study aimed to evaluate the quality of information provided by artificial intelligence (AI) applications regarding ENT surgeries and usability for patients.
Methods
ChatGPT 4.0, GEMINI 1.5 Flash, Copilot, Claude 3.5 Sonnet and DeepSeek-R1 were asked to provide detailed responses to patient-oriented questions about 15 ENT surgeries. Each AI application was queried three times, with a 3-day interval between each session. Two ENT specialists evaluated all responses using the Quality Analysis of Medical Artificial Intelligence (QAMAI) tool.
Results
Average QAMAI scores for each AI application were as follows: ChatGPT 4.0 (27.56 ± 1.20), GEMINI 1.5 Flash (26.24 ± 1.26), Copilot (26.84 ± 1.35), Claude 3.5 Sonnet (28.24 ± 0.77) and DeepSeek-R1 (28.13 ± 0.84). A statistically significant difference was found among the applications (p < 0.001). ICC analysis indicated high stability across evaluations conducted for all five AI applications (p < 0.001).
Conclusion
AI has the potential to provide patients with accurate and consistent information about ENT surgeries, yet differences in QAMAI scores show that information quality varies between platforms.
This chapter discusses the role of palliative care in the management of respiratory problems in neurological disease. To realize the right to live and to enjoy equal participation for neurological patients with respiratory symptoms may be complex and require extensive human, technical and financial resources, and, especially in low- and mid-income countries these resources may not be present. National and cultural differences in the role of palliative care are discussed, furthermore specific problems of palliative care in respiratory therapy such as correct indications, informed consent issues, therapy restriction physician-assisted suicide and euthanasia, in care settings such as critical care. The authors suggest a pathway to decision-making and introduce treatment strategies with a focus on respiratory symptoms.
In this chapter of Complex Ethics Consultations: Cases that Haunt is, the author describes the request of a middle-aged patient with COPD for terminal ventilator withdrawal. The consult occurred soon after the author began working at a Catholic hospital. The patient’s husband objected to withdrawal, despite the fact that the patient had reasonable capacity and could mouth or write. The attending physician said he would not withdraw treatment if "there was disagreement" in the family. Upon questioning, the patient reiterated her wishes and said the team should not abide by his wishes and did not want him involved in the decision if he was objecting to her request. A week later, still on the ventilator, she declined SNF placement and her distraught husband wanted transfer. Suspicions about her husband gained traction on the unit. The author offers advice and insights for new ethics consultants. She was haunted by her inexperience, her doubt whether she was assertive enough, the narrative around her husband’s suitability as a surrogate, and some of the staff’s admonition that the consultant did sufficiently advocate for the patient.
Anosognosia, commonly understood as a lack of insight, renders individuals with schizophrenia and schizoaffective disorder unable to understand that they are living with a disease, often resulting in a refusal to accept treatment. Typically, to impose involuntary commitment in an effort to obtain treatment, an individual must be a danger to others or themselves. Even if involuntary commitment is imposed, however, an individual may remain competent to refuse medication—despite symptoms of anosognosia and an inability to understand that they are ill. This article examines the existing legal theories of competency and informed consent and proposes a statutory definition of competency that encompasses the specific needs of people with anosognosia, while considering the significant interests at stake when taking away an individual’s right to choose or refuse treatment.
Ethical decisions must be made at every phase of a research study. Codes of ethics provide guidance on behaviors that are permissible or nonpermissible for research investigators. In contemporary science, investigators are required to have regular training on the responsible research conduct relevant to studies involving human subjects and animals. Despite this training, ethical lapses occur. This chapter explores some of the basic issues, including ethical mandates on what should be done, what must be done, and what must not be done. We consider the history of serious ethical concerns, such as the Tuskegee experiment. The chapter also reviews historical milestones such as the Belmont report, the Declaration of Helsinki, and the establishment of the Common Rule that is applied for research funded by US federal agencies. Further, the chapter explores challenges relevant to the reporting of conflicts of interests, imperfections in institutional review boards (IRBs), and ethical challenges in studies that use placebos. Among a range of research methods, randomized controlled trials tend to encounter the greatest number of ethical concerns.
Module 6 presents various ways in which cultures understand, describe, and explain illness. These conceptualizations are based in cultural ontologies and epistemologies, affecting how people communicate about illnesses and their expectations for treatment and outcomes. Indigenous and shamanic traditions are presented.
Chapter 3 explores safety and ethics in online and offline environments, particularly focused on research with adolescents. The chapter emphasises the need for a more rapid response to a very rapidly evolving field. Ethics is understood from a dynamic perspective, adapting to the individual, contextual, social and cultural contexts and needs of individuals and studies. Getting the balance right between enabling adolescent voice and safety is challenging.
The availability of data is a condition for the development of AI. This is no different in the context of healthcare-related AI applications. Healthcare data are required in the research, development, and follow-up phases of AI. In fact, data collection is also necessary to establish evidence of compliance with legislation. Several legislative instruments, such as the Medical Devices Regulation and the AI Act, enacted data collection obligations to establish (evidence of) the safety of medical therapies, devices, and procedures. Increasingly, such health-related data are collected in the real world from individual data subjects. The relevant legal instruments therefore explicitly mention they shall be without prejudice to other legal acts, including the GDPR. Following an introduction to real-world data, evidence, and electronic health records, this chapter considers the use of AI for healthcare from the perspective of healthcare data. It discusses the role of data custodians, especially when confronted with a request to share healthcare data, as well as the impact of concepts such as data ownership, patient autonomy, informed consent, and privacy and data protection-enhancing techniques.
This chapter covers the common ethical and legal issues that arise in psychiatry. It begins with an overview of the four ethical principles guiding medical practice: autonomy, beneficence, nonmaleficence, and justice. A brief discussion of parens patriae and police power follow, highlighting their particular applications in psychiatry. The chapter then goes on to illustrate how the balancing of these principles guides everyday ethical and legal issues. Confidentiality and its exceptions in the interests of safety and prevention of abuse/neglect are covered in detail. Next, informed consent and decision-making are explored. The requirements for informed consent are reviewed, leading into a discussion of those instances when an individual lacks capacity for informed consent (surrogate decision-making, involuntary admission and treatment, and exceptions). Finally, the chapter closes with an examination of the prohibitions against dual relationships, including sexual relationships, with patients.
The scientific community fundamentally requires the conduct of research to meet ethical standards. Bureaucracy and regulation may enforce these requirements, but they ultimately reflect the underlying values of science and the social norms that translate these values into practice. In creating knowledge, scientists must protect research participants, and they are also obliged to treat their data and communications in accordance with honesty, transparency, and a commitment to the benefit of society. We review the history and current state of human participant protection; make a case that many of the changes in standards of data handling and publication reporting over the past ten years themselves have ethical dimensions; and briefly list a number of pending ethics issues in research and publishing that do not as yet have a clear, consensual resolution in the field of psychology.
This chapter provides an overview of methods for data collection in Conversation Analysis and practical advice on collecting interactional data. We touch on several recurrent issues that researchers encounter in the process. These issues include accessing data; the use of existing data (including user-uploaded, like YouTube); navigating gatekeepers in accessing a setting; building trust with members of a setting; building ethnographic understanding of activities under examination; obtaining ethical approvals; protecting privacy of participants; methods and materials for informed consent (including with populations with diminished capacities); devising a recording schedule; deciding when/how often to record; selecting the right quantity and type of recording equipment; considerations of spatial and audio environments; the use of alternative technologies for recording; recording mediated interactions; procedures and check-lists for before recording; positioning and framing the camera; when to press record and when to press stop; navigating the presence of the researcher-recorder on site; and gathering supplementary documentation from the setting.
The celebration of the anniversary of the Center for Health Law, Ethics & Human Rights (the “Center”) provides an opportunity to reflect on what defines the field of health law, as well as its conjoined twins of bioethics and human rights. The related fields are vast, and the subjects they encompass are ever-expanding. It is probably impossible to lay out a summary that does justice to their expansive, interdisciplinary scope. Instead, my discussion of the Center examines a subject that barely existed when the Center was formed in 19581 and that continues to make headlines more than sixty–six years later — organ transplantation. Transplantation is useful as an illustration of the joint fields of health law, bioethics, and human rights. It is a field that grew with us from infancy to maturity during the time of the Center’s growth and that illustrates how several related disciplines — most notably law and medical sciences — are essential to the development of organ transplantation. Additionally, organ transplantation and experiments involving organ transplantation have produced some of the most spectacular cases of human experimentation. Because of both the novelty and human drama these experiments involve, I will use some of them as examples of the pivotal health law and bioethics work the Center engages in. These examples, and others that will be touched on, lead me to conclude that there is no field that matches the life and death drama of health law, especially in the human organ transplantation field. This selective history of health law at the Center, including the definition of death and the limits of surrogate consent, suggest that the legal and bioethical issues brought to us by innovative organ transplantation surgery are unlikely to be exhausted any time soon.
Fifty years ago, George J. Annas and Joseph Healey introduced the concept of a “patient rights advocate” in their seminal 1974 article published in the Vanderbilt Law Review. Annas expanded this vision in the ACLU Handbook, The Rights of Hospitalized Patients, later broadening its scope to all medical settings. This essay traces the evolution of patient advocacy, highlighting pivotal milestones: the advent of cancer navigators, the rise of the patient safety movement, the establishment of patient advocacy organizations, the development of Patient Advocate Offices in hospitals, and the emergence of independent advocates with board certification. It also examines the impact of advocacy on healthcare outcomes, costs, and patient-provider satisfaction, and explores future directions for this vital and growing profession.
There is a growing movement within contemporary medical ethics to blur the boundaries between clinical medicine and clinical research. Some writers now argue that the research-practice distinction is outdated and the importance of distinguishing between research and medicine is no longer as pressing as it once was or seemed to be. Instead, we are now urged to view the health-care system as a dynamic “learning health-care system” in which research components are embedded within standard clinical care. This essay defends the ethical significance of the research-practice distinction while acknowledging the reality and usefulness of integrated health care. A key claim that this essay advances is that the principle of clinical equipoise, which has largely been rejected by research ethicists, can be reinterpreted and repurposed to help distinguish medical practices that call for more demanding forms of informed consent from those that do not.
In 1974, the Center for Law and Health Sciences at the Boston University School of Law provided legal background papers on informed consent to research to the newly created National Commission for the Protection of Human Subjects of Biomedical and Behavioral Sciences. These papers were written by George J. Annas, the Center’s Director, as well as Barbara F. Katz and I, who were staff attorneys at the time. These papers can be found in the appendices to the Commission reports1 and in our book Informed Consent to Human Experimentation: The Subject’s Dilemma,2 in which we present a refined version of those papers. This project introduced me to the world of human research ethics and the complexities of protecting the rights and welfare of research subjects.3 Over the past fifty years, I have sat on Institutional Review Boards (IRBs), been a member of the FDA’s Pediatric Research Advisory Board, and engaged in varying activities related to human subject protection. During this time, I took for granted that consent forms were the best method for ensuring that subjects were thoroughly informed about all aspects of the proposed research. Like many IRB members, I spent considerable time reviewing, editing, and debating with other IRB members about the precise wording of these forms.
In 2023, Henrietta Lacks’ family won a settlement from Thermo Fisher Scientific on the grounds that the company had been “unjustly enriched” by the sale of products developed with Henrietta’s cells. Given that hundreds of thousands of people have tissue stored in the United States, this article explores how today’s patients might fare if they similarly sued professionals and companies that undertake unauthorized research on or commercialization of their tissue on the grounds of conversion, unjust enrichment, lack of informed consent, breach of fiduciary duty and, where government entities are involved, Fourteenth Amendment claims. The article notes that the practices that were subsequently seen as unethical in Henrietta Lacks’ care continue in some health care institutions today. It also analyzes how research and commercialization without consent can lead to a lack of trust in the research enterprise and the unwillingness of people to participate in research.