Challenging Disability Discrimination in the Clinical Use of PDMP Algorithms
Hastings Cent Rep. 2024 Jan;54(1):3-7. doi: 10.1002/hast.1561.ABSTRACTState prescription drug monitoring programs (PDMPs) use proprietary, predictive software platforms that deploy algorithms to determine whether a patient is at risk for drug misuse, drug diversion, doctor shopping, or substance use disorder (SUD). Clinical overreliance on PDMP algorithm-generated information and risk scores motivates clinicians to refuse to treat-or to inappropriately treat-vulnerable people based on actual, perceived, or past SUDs, chronic pain conditions, or other disabilities. This essay provides a framework for challenging PDMP algori...
Source: The Hastings Center Report - February 23, 2024 Category: Medical Ethics Authors: Elizabeth Pendo Jennifer Oliva Source Type: research
Hidden Ethical Challenges in Health Data Infrastructure
Hastings Cent Rep. 2024 Jan;54(1):15-19. doi: 10.1002/hast.1564.ABSTRACTData infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical considerations, apart from the actions (such as data sharing and data analysis) that it enables. This essay outlines some of these considerations-namely, the ethics of efficiency, the visibility of infrastructure, the power of standards, and the impact of new technologi...
Source: The Hastings Center Report - February 23, 2024 Category: Medical Ethics Authors: Nicole Contaxis Source Type: research
Ethical Challenges of Advances in Vaccine Delivery Technologies
Hastings Cent Rep. 2024 Jan;54(1):13-15. doi: 10.1002/hast.1563.ABSTRACTStrategies to address misinformation and hesitancy about vaccines, including the fear of needles, and to overcome obstacles to access, such as the refrigeration that some vaccines demand, strongly suggest the need to develop new vaccine delivery technologies. But, given widespread distrust surrounding vaccination, these new technologies must be introduced to the public with the utmost transparency, care, and community involvement. Two emerging technologies, one a skin-patch vaccine and the other a companion dye and detector, provide excellent examples ...
Source: The Hastings Center Report - February 23, 2024 Category: Medical Ethics Authors: Arthur L Caplan Kyle Ferguson Anne Williamson Ethics and Policy Working Group on New Vaccine Delivery Technologies Source Type: research
Brain Pioneers and Moral Entanglement: An Argument for Post-trial Responsibilities in Neural-Device Trials
Hastings Cent Rep. 2024 Jan;54(1):24-33. doi: 10.1002/hast.1566.ABSTRACTWe argue that in implanted neurotechnology research, participants and researchers experience what Henry Richardson has called "moral entanglement." Participants partially entrust researchers with access to their brains and thus to information that would otherwise be private, leading to created intimacies and special obligations of beneficence for researchers and research funding agencies. One of these obligations, we argue, is about continued access to beneficial technology once a trial ends. We make the case for moral entanglement in this context thro...
Source: The Hastings Center Report - February 23, 2024 Category: Medical Ethics Authors: Sara Goering Andrew I Brown Eran Klein Source Type: research
Neuroscience and Society: Supporting and Unsettling Public Engagement
Hastings Cent Rep. 2024 Jan;54(1):20-23. doi: 10.1002/hast.1565.ABSTRACTAdvancing neuroscience is one of many topics that pose a challenge often called "the alignment problem"-the challenge, that is, of assuring that science policy is responsive to and in some sense squares with the public's values. This issue of the Hastings Center Report launches a series of scholarly essays and articles on the ethical and social issues raised by this vast body of medical research and bench science. The series, which will run under the banner "Neuroscience and Society," is supported by the Dana Foundation and seeks to promote deliberativ...
Source: The Hastings Center Report - February 23, 2024 Category: Medical Ethics Authors: Gregory E Kaebnick Source Type: research
Identity Theft, Deep Brain Stimulation, and the Primacy of Post-trial Obligations
Hastings Cent Rep. 2024 Jan;54(1):34-41. doi: 10.1002/hast.1567.ABSTRACTPatient narratives from two investigational deep brain stimulation trials for traumatic brain injury and obsessive-compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. The early success of these interventions makes a compelling case for continued post-trial access to these technologies. Given the centrality of personal identity to respect for persons, a failure to provide continued access can be understood to represent a metaphorical identity theft. Such a loss recapitulates th...
Source: The Hastings Center Report - February 23, 2024 Category: Medical Ethics Authors: Joseph J Fins Amanda R Merner Megan S Wright Gabriel L ázaro-Muñoz Source Type: research
Opening the Door: Rethinking "Difficult Conversations" about Living and Dying with Dementia
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S22-S28. doi: 10.1002/hast.1551.ABSTRACTThis essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find it easier to bring up a range of...
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Authors: Mara Buchbinder Nancy Berlinger Source Type: research
When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S11-S21. doi: 10.1002/hast.1550.ABSTRACTSome individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life-sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a termin...
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Authors: Emily A Largent Jane Lowers Thaddeus Mason Pope Timothy E Quill Matthew K Wynia Source Type: research
Guiding the Future: Rethinking the Role of Advance Directives in the Care of People with Dementia
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S33-S39. doi: 10.1002/hast.1553.ABSTRACTWhen people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better-informed decisions has led to the development of dementia-specific advance directives, in which people are given tools to help them communicate what their preferences are while they are still able. Such dire...
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Authors: Barak Gaster Thaddeus Mason Pope Source Type: research
Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S29-S32. doi: 10.1002/hast.1552.ABSTRACTCultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meanin...
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Authors: Cindy L Cain Timothy E Quill Source Type: research
Selected Publications Relevant to Topics Explored in This Special Report, with a Focus on the United States
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S48. doi: 10.1002/hast.1555.NO ABSTRACTPMID:38382037 | DOI:10.1002/hast.1555 (Source: The Hastings Center Report)
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Source Type: research
What Makes a Better Life for People Facing Dementia? Toward Dementia-Friendly Health and Social Policy, Medical Care, and Community Support in the United States
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S40-S47. doi: 10.1002/hast.1554.ABSTRACTTaking steps to build a more dementia-friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might consider a "good ...
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Authors: Barak Gaster Emily A Largent Source Type: research
Related Developments and Debates in Canada: Time Line and Publications
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S49-S50. doi: 10.1002/hast.1556.NO ABSTRACTPMID:38382039 | DOI:10.1002/hast.1556 (Source: The Hastings Center Report)
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Source Type: research
Choice in the Context of Dementia: Emerging Issues for Health Care Practice in Aging Societies
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S2-S10. doi: 10.1002/hast.1549.ABSTRACTThis introduction to the special report "Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives" explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age-associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other reso...
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Authors: Nancy Berlinger Emily A Largent Mara Buchbinder Mildred Z Solomon Source Type: research
Opening the Door: Rethinking "Difficult Conversations" about Living and Dying with Dementia
Hastings Cent Rep. 2024 Jan;54 Suppl 1:S22-S28. doi: 10.1002/hast.1551.ABSTRACTThis essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find it easier to bring up a range of...
Source: The Hastings Center Report - February 21, 2024 Category: Medical Ethics Authors: Mara Buchbinder Nancy Berlinger Source Type: research
