Media for Coping During COVID-19 Social Distancing: Stress, Anxiety, and Psychological Well-Being.Allison L. Eden,Benjamin K.Johnson,Leonard Reinecke &Sara M. Grady -2020 -Frontiers in Psychology 11:577639.detailsIn spring 2020, COVID-19 and the ensuing social distancing and stay-at-home orders instigated abrupt changes to employment and educational infrastructure, leading to uncertainty, concern, and stress among United States college students. The media consumption patterns of this and other social groups across the globe were affected, with early evidence suggesting viewers were seeking both pandemic-themed media and reassuring, familiar content. A general increase in media consumption, and increased consumption of specific types of content, may have been due to media use (...) for coping strategies. This paper examines the relationship between the stress and anxiety of university students and their strategic use of media for coping during initial social distancing periods in March-April 2020 using data from a cross-sectional survey. We examine links between specific types of media use with psychological well-being concepts, and examine the moderating roles of traits (hope, optimism, and resilience) as buffers against negative relationships between stress and anxiety and psychological well-being. Our findings indicate that stress was linked to more hedonic and less eudaimonic media use, as well as more avoidant and escapist media-based coping. Anxiety, on the other hand, was linked to more media use in general, specifically more eudaimonic media use and a full range of media-based coping strategies. In turn, escapist media was linked to negative affect, while reframing media and eudaimonic media were linked to positive affect. Avoidant coping was tied to poorer mental health, and humor coping was tied to better mental health. Hedonic and need-satisfying media use were linked to more flourishing. Hope, optimism, and resilience were all predictive of media use, with the latter two traits moderating responses to stress and anxiety. The findings give a nuanced portrait of college students’ media use during a pandemic-induced shutdown, showing that media use is closely intertwined with well-being in both adaptive and maladaptive patterns. (shrink)
A Comparison of the Effects of Ethics Training on International and US Students.T. H. Lee Williams,Shane Connelly,Michael D. Mumford,Alexandra E. MacDougall,Logan L. Watts,James F.Johnson &Logan M. Steele -2016 -Science and Engineering Ethics 22 (4):1217-1244.detailsAs scientific and engineering efforts become increasingly global in nature, the need to understand differences in perceptions of research ethics issues across countries and cultures is imperative. However, investigations into the connection between nationality and ethical decision-making in the sciences have largely generated mixed results. In Study 1 of this paper, a measure of biases and compensatory strategies that could influence ethical decisions was administered. Results from this study indicated that graduate students from the United States and international graduate students (...) studying in the US are prone to different biases. Based on these findings, recommendations are made for developing ethics education interventions to target these decision-making biases. In Study 2, we employed an ethics training intervention based on ethical sensemaking and used a well-established measure of ethical decision-making that more fully captures the content of ethical judgment. Similar to Study 1, the results obtained in this study suggest differences do exist between graduate students from the US and international graduate students in ethical decision-making prior to taking the research ethics training. However, similar effects were observed for both groups following the completion of the ethics training intervention. (shrink)
The Work of ASBH’s Clinical Ethics Consultation Affairs Committee: Development Processes Behind Our Educational Materials.George E. Hardart,Katherine Wasson,Ellen M. Robinson,Aviva Katz,Deborah L. Kasman,Liza-MarieJohnson,Barrie J. Huberman,Anne Cordes,Barbara L. Chanko,Jane Jankowski &Courtenay R. Bruce -2018 -Journal of Clinical Ethics 29 (2):150-157.detailsThe authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called (...) A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work. (shrink)
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The Routledge Handbook of Neuroethics.L. Syd M.Johnson &Karen S. Rommelfanger (eds.) -2017 - Routledge.details_The Routledge Handbook of Neuroethics_ offers the reader an informed view of how the brain sciences are being used to approach, understand, and reinvigorate traditional philosophical questions, as well as how those questions, with the grounding influence of neuroscience, are being revisited beyond clinical and research domains. It also examines how contemporary neuroscience research might ultimately impact our understanding of relationships, flourishing, and human nature. The _Handbook_ features easy-to-follow chapters that appear here for the first time in print and—written by (...) 61 key scholars and fresh voices—represent the wide range of viewpoints in neuroethics. The volume spotlights new technologies and historical articulations of key problems, issues, and concepts, and includes cross-referencing between chapters to highlight the complex interactions of concepts and ideas within neuroethics. These features enhance the _Handbook_’s utility by providing readers with a contextual map for different approaches to issues, and a guide to further avenues of interest. (shrink)
The Ethics of Uncertainty: Entangled Ethical and Epistemic Risks in Disorders of Consciousness.L. Syd M.Johnson -2021 - New York, NY, USA: Oxford University Press.detailsDisorders of Consciousness (DoCs) raise difficult and complex questions about the value of life for persons with impaired consciousness, the rights of persons unable to make medical decisions, and our social, medical, and ethical obligations to patients whose personhood has frequently been challenged and neglected. Recent neuroscientific discoveries have led to enhanced understanding of the heterogeneity of these disorders, and focused renewed attention on the medical and ethical problem of misdiagnosis. -/- This book examines the entanglement of epistemic and ethical (...) uncertainty in DoCs and other medical contexts, and how they interact to create both epistemic and ethical risks. Philosopher and bioethicist L. Syd MJohnson pulls together multiple threads in this work: the ontological mysteries of consciousness, medical uncertainty about unconsciousness, ableist bias, withdrawal of treatment in neurointensive care, and the rarely questioned view that consciousness is essential to personhood and moral status.Johnson challenges longstanding bioethical dogmas about DoC patients, and argues for an ethics of uncertainty for contexts where there is a need for decisive action in the presence of unavoidable uncertainty. The ethics of uncertainty refocuses ethical inquiry concerning persons with DoCs, placing less emphasis on their contested personhood, and more on inductive risk and uncertainty, on respect for autonomy, and especially on epistemic justice. With applications to various decisional contexts where uncertainty and ethical risk interact, this ethical approach enables surrogate decision makers facing fraught and risky choices to fulfill their obligations as moral and epistemic agents. (shrink)
Implications of recent neuroscientific findings in patients with disorders of consciousness.L. Syd M.Johnson -2010 -Neuroethics 3 (2):185-196.detailsA pressing issue in neuroscience is the high rate of misdiagnosis of disorders of consciousness. As new research on patients with disorders of consciousness has revealed surprising and previously unknown cognitive capacities, the need to develop better and more reliable methods of diagnosing these disorders becomes more urgent. So too the need to expand our ethical and social frameworks for thinking about these patients, to accommodate new concerns that will accompany new revelations. A recent study on trace conditioning and learning (...) in vegetative and minimally conscious patients shows promise as a potential diagnostic and prognostic tool, both for differentiating between states of diminished consciousness, and for predicting patient outcomes, but it also generates fresh concerns about quality of life in patients previously thought to be completely unaware. Optimism about progress in diagnosing and treating disorders of consciousness must be tempered by the understanding that not all progress will necessarily be good for all patients. The prognosis for most patients remains bleak, and we must remain vigilant to acute questions and concerns about welfare and quality of life. (shrink)
Existing Ethical Tensions in Xenotransplantation.L. Syd M.Johnson -2022 -Cambridge Quarterly of Healthcare Ethics 31 (3):355-367.detailsThe genetic modification of pigs as a source of transplantable organs is one of several possible solutions to the chronic organ shortage. This paper describes existing ethical tensions in xenotransplantation (XTx) that argue against pursuing it. Recommendations for lifelong infectious disease surveillance and notification of close contacts of recipients are in tension with the rights of human research subjects. Parental/guardian consent for pediatric xenograft recipients is in tension with a child’s right to an open future. Individual consent to transplant is (...) in tension with public health threats that include zoonotic diseases. XTx amplifies concerns about justice in organ transplantation and could exacerbate existing inequities. The prevention of infectious disease in source animals is in tension with the best practices of animal care and animal welfare, requiring isolation, ethologically inappropriate housing, and invasive reproductive procedures that would severely impact the well-being of intelligent social creatures like pigs. (shrink)
Concussion and youth hockey: It’s time to break the cycle.L. Syd M.Johnson -2011 -Canadian Medical Association Journal 183:921-924.detailsConcussion is a common, serious injury in youth ice hockey, affecting up to 25% of players per season by one estimate. • Bodychecking is a major cause of injury and concussion in hockey, yet some Canadian provinces allow players as young as nine years to engage in bodychecking. • Reducing rates of concussion requires eliminating bodychecking for all except elite hockey players aged 16 years and older, as per the recommendations of the Canadian Academy of Sports and Exercise Medicine.
Inference and Inductive Risk in Disorders of Consciousness.L. Syd M.Johnson -2016 -American Journal of Bioethics Neuroscience 7 (1):35-43.detailsSeveral types of inferences are employed in the diagnosis and prognosis of patients with brain injuries and disorders of consciousness. These inferences introduce unavoidable uncertainty, and can be evaluated in light of inductive risk: the epistemic and nonepistemic risks of being wrong. This article considers several ethically significant inductive risks generated by and interacting with inferences about patients with disorders of consciousness, and argues for prescriptive measures to manage and mitigate inductive risk in the context of disorders of consciousness.
A Belmont Report for Animals?Hope Ferdowsian,L. Syd M.Johnson,JaneJohnson,Andrew Fenton,Adam Shriver &John Gluck -2020 -Cambridge Quarterly of Healthcare Ethics 29 (1):19-37.detailsAbstract:Human and animal research both operate within established standards. In the United States, criticism of the human research environment and recorded abuses of human research subjects served as the impetus for the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, and the resulting Belmont Report. The Belmont Report established key ethical principles to which human research should adhere: respect for autonomy, obligations to beneficence and justice, and special protections for vulnerable individuals and (...) populations. While current guidelines appropriately aim to protect the individual interests of human participants in research, no similar, comprehensive, and principled effort has addressed the use of (nonhuman) animals in research. Although published policies regarding animal research provide relevant regulatory guidance, the lack of a fundamental effort to explore the ethical issues and principles that should guide decisions about the potential use of animals in research has led to unclear and disparate policies. Here, we explore how the ethical principles outlined in the Belmont Report could be applied consistently to animals. We describe how concepts such as respect for autonomy and obligations to beneficence and justice could be applied to animals, as well as how animals are entitled to special protections as a result of their vulnerability. (shrink)
Best Interests and Decisions to Withdraw Life-Sustaining Treatment from a Conscious, Incapacitated Patient.L. Syd M.Johnson &Kathy L. Cerminara -2025 -Cambridge Quarterly of Healthcare Ethics:1-17.detailsConscious but incapacitated patients need protection from both undertreatment and overtreatment, for they are exceptionally vulnerable, and dependent on others to act in their interests. In the United States, the law prioritizes autonomy over best interests in decision making. Yet U.S. courts, using both substituted judgment and best interests decision making standards, frequently prohibit the withdrawal of life-sustaining treatment from conscious but incapacitated patients, such as those in the minimally conscious state, even when ostensibly seeking to determine what patients would (...) have wanted. In the United Kingdom, under the Mental Capacity Act of 2005, courts decide on the best interests of incapacitated patients by, in part, taking into account the past wishes and values of the patient. This paper examines and compares those ethicolegal approaches to decision making on behalf of conscious but incapacitated patients. We argue for a limited interpretation of best interests such that the standard is properly used only when the preferences of a conscious, but incapacitated patient are unknown and unknowable. When patient preferences and values are known or can be reasonably inferred, using a holistic, all-things-considered substituted judgment standard respects patient autonomy. (shrink)
The Case for Reasonable Accommodation of Conscientious Objections to Declarations of Brain Death.L. Syd M.Johnson -2016 -Journal of Bioethical Inquiry 13 (1):105-115.detailsSince its inception in 1968, the concept of whole-brain death has been contentious, and four decades on, controversy concerning the validity and coherence of whole-brain death continues unabated. Although whole-brain death is legally recognized and medically entrenched in the United States and elsewhere, there is reasonable disagreement among physicians, philosophers, and the public concerning whether brain death is really equivalent to death as it has been traditionally understood. A handful of states have acknowledged this plurality of viewpoints and enacted “conscience (...) clauses” that require “reasonable accommodation” of religious and moral objections to the determination of death by neurological criteria. This paper argues for the universal adoption of “reasonable accommodation” policies using the New Jersey statute as a model, in light of both the ongoing controversy and the recent case of Jahi McMath, a child whose family raised religious objections to a declaration of brain death. Public policies that accommodate reasonable, divergent viewpoints concerning death provide a practical and compassionate way to resolve those conflicts that are the most urgent, painful, and difficult to reconcile. (shrink)
Paper: The right to die in the minimally conscious state.L. Syd M.Johnson -2011 -Journal of Medical Ethics 37 (3):175-178.detailsThe right to die has for decades been recognised for persons in a vegetative state, but there remains controversy about ending life-sustaining medical treatment for persons in the minimally conscious state. The controversy is rooted in assumptions about the moral significance of consciousness, and the value of life for patients who are conscious and not terminally ill. This paper evaluates these assumptions in light of evidence that generates concerns about quality of life in the MCS. It is argued that surrogates (...) should be permitted to make decisions to withdraw life-sustaining medical treatment from patients in the MCS. (shrink)
Neuroethics and Nonhuman Animals.L. Syd M.Johnson,Andrew Fenton &Adam Shriver (eds.) -2020 - Springer.detailsThis edited volume represents a unique addition to the available literature on animal ethics, animal studies, and neuroethics. Its goal is to expand discussions on animal ethics and neuroethics by weaving together different threads: philosophy of mind and animal minds, neuroscientific study of animal minds, and animal ethics. Neuroethical questions concerning animals’ moral status, animal minds and consciousness, animal pain, and the adequacy of animal models for neuropsychiatric disease have long been topics of debate in philosophy and ethics, and more (...) recently also in neuroscientific research. The book presents a transdisciplinary blend of voices, underscoring different perspectives on the broad questions of how neuroscience can contribute to our understanding of nonhuman minds, and on debates over the moral status of nonhuman animals. All chapters were written by outstanding scholars in philosophy, neuroscience, animal behavior, biology, neuroethics, and bioethics, and cover a range of issues and species/taxa. Given its scope, the book will appeal to scientists and students interested in the debate on animal ethics, while also offering an important resource for future researchers. Chapter 13 of this book is available open access under a CC BY 4.0 license at link.springer.com. (shrink)
“Time Is Brain:” DCDD-NRP Invalidates the Unified Brain-Based Determination of Death.L. Syd M.Johnson -2024 -American Journal of Bioethics 24 (6):84-86.detailsBernat argues for a unified brain-based determination of death (UBDD), noting that it “conceptually justifies” death determination both in Donation after Circulatory Determination of Death (DCDD) a...
The Road Not Mapped: The Neuroethics Roadmap on Research with Nonhuman Primates.L. Syd M.Johnson -2020 -American Journal of Bioethics Neuroscience 11 (3):176-183.detailsWe have arrived at an inflection point, a moment in history when the sentience, conscious- ness, intelligence, agency, and even the moral agency of many nonhuman animals can no longer be questioned without ignoring centuries of accumulated scientific knowledge. Nowhere is this more true than in our understanding of nonhuman primates (NHPs). A neu- roethics committed to probing the ethical implications of brain research must be able to respond to and anticipate the challenges ahead as brain projects globally prepare to (...) increase the use of NHPs in research. This requires adopting a less anthropocentric focus that includes nonhuman animals within its scope. But the Neuroethics Roadmap represents a missed opportunity to critically examine the future direction of research with NHPs in an ethically-responsive neuroscience. (shrink)
DCD Donors Are Dying, but Not Dead.L. Syd M.Johnson -2023 -American Journal of Bioethics 23 (2):28-30.detailsAs usually understood, the Dead Donor Rule (DDR) for organ donation requires either that (1) the donor is already dead (which legally occurs when death is determined by neurological criteria), and/or that (2) organ procurement does not cause the donor’s death.
Toward an Anti-Maleficent Research Agenda.Hope Ferdowsian,Agustin Fuentes,L. Syd M.Johnson,Barbara J. King &Jessica Pierce -2022 -Cambridge Quarterly of Healthcare Ethics 31 (1):54-58.detailsImportant advances in biomedical and behavioral research ethics have occurred over the past few decades, many of them centered on identifying and eliminating significant harms to human subjects of research. Comprehensive attention has not been paid to the totality of harms experienced by animal subjects, although scientific and moral progress require explicit appraisal of these harms. Science is a public good and the prioritizing within, conduct of, generation of, and application of research must soundly address questions about which research is (...) morally defensible and valuable enough to support through funding, publication, tenure, and promotion. Likewise, educational pathways of re-imagined science are critical. (shrink)
Neuroethics of the Nonhuman.L. Syd M.Johnson -2019 -American Journal of Bioethics Neuroscience 10 (3):111-113.detailsThe Emerging Issues Task Force (Kellmeyer et al. 2019) identifies several important trends and concerns that neuroethics will encounter and grapple with in the com- ing decades. Among these are ethical issues related to the creation of new nonhuman entities, such as artificial intelligence systems, and human origin entities like brain organoids. The task force briefly mentions animal minds and animal rights, to which neuroethics to date has paid scant attention (Buller et al. 2014). As neuroscientific knowledge and knowledge from (...) other fields, including, to name a few, comparative psychology, primatology, ethology, biology, genetics, and medical sociology, accu- mulate, ethical concerns about the use of nonhuman ani- mals in research, agriculture, entertainment, and elsewhere will grow more visible and more urgent. Turning neuroethical attention toward nonhuman ani- mals also promises to illuminate issues related to specific human populations that are within the purview of a more expansive, forward-looking neuroethics. (shrink)
Institutional Access to Gene Therapy for Sickle Cell Disease – Treatment on a Clinical Trial or Receive a Newly Approved Therapy?L. M.Johnson,B. S. Wilfond,A. D. Ray &L. Dawson -2025 -American Journal of Bioethics 25 (4):145-146.detailsThe United States Food and Drug Administration (FDA) approved two gene therapies for sickle cell disease (SCD) in the Fall of 2023. SCD is an inherited disorder of abnormal hemoglobin production af...
Shifting the Moral Burden: Expanding Moral Status and Moral Agency.L. Syd M.Johnson -2021 -Health and Human Rights Journal 2 (23):63-73.detailsTwo problems are considered here. One relates to who has moral status, and the other relates to who has moral responsibility. The criteria for mattering morally have long been disputed, and many humans and nonhuman animals have been considered “marginal cases,” on the contested edges of moral considerability and concern. The marginalization of humans and other species is frequently the pretext for denying their rights, including the rights to health care, to reproductive freedom, and to bodily autonomy. There is broad (...) agreement across cultural and philosophical traditions about the capacities and responsibilities of moral agents. I propose an inclusive and expansive way of thinking about moral status, situating it not in the characteristics or capacities of individuals, but in the responsibilities and obligations of moral agents. Moral agents, under this view, are not privileged or entitled to special treatment but rather have responsibilities. I approach this by considering some African communitarian conceptions of moral status and moral agency. I propose that moral agency can also be more expansive and include not just individual moral agents but collective entities that have some of the traits of moral agents: power, freedom, and the capacity to recognize and act on the demands of morality and acknowledge and respect the rights of others. Expanding who and what is a moral agent correspondingly extends moral responsibility for respecting rights and fostering the conditions for the health and well-being of humans and animals onto the collective entities who uniquely have the capacity to attend to global-scale health threats such as pandemics and human-caused climate change. (shrink)
All things considered: Surrogate decision-making on behalf of patients in the minimally conscious state.L. Syd M.Johnson &Kathy L. Cerminara -2020 -Clinical Ethics 15 (3):111-119.detailsThe minimally conscious state presents unique ethical, legal, and decision-making challenges because of the combination of diminished awareness, phenomenal experience, and diminished or absent comm...
Sport-related neurotrauma and neuroprotection: Are Return-to-play protocols justified by paternalism?L. Syd M.Johnson -2014 -Neuroethics 1 (8):15-26.detailsSport-related neurotrauma annually affects millions of athletes worldwide. The return-to-play protocol (RTP) is the dominant strategy adopted by sports leagues and organizations to manage one type of sport-related neurotrauma: concussions. RTPs establish guidelines for when athletes with concussions are to be removed from competition or practice, and when they can return. RTPs are intended to be neuroprotective, and to protect athletes from some of the harms of sport-related concussions, but there is athlete resistance to and noncompliance with RTPs. This prompts (...) consideration of whether RTPs, as employed in adult, professional sports, are paternalistic, and if they are, whether they are objectionably so. If RTPs are uniquely effective at protecting current or future athlete autonomy, they might be justified by paternalism. I conclude that RTPs are paternalistic in their effects, but are not adequately justified, and thus they are objectionable. (shrink)
Can they suffer? The ethical priority of quality of life research in disorders of consciousness.L. Syd M.Johnson -2013 -Bioethica Forum 6 (4):129-136.detailsThere is ongoing ethical and legal debate about withdrawing life sup- port for patients with disorders of consciousness (DOCs). Frequently fu- eling the debate are implicit assumptions about the value of life in a state of impaired consciousness, and persistent uncertainty about the quality of life (QoL) of these persons. Yet there are no validated methods for assessing QoL in this population, and a significant obstacle to doing so is their inability to communicate. Recent neuroscientific discoveries might circumvent that problem (...) and help shed light on QoL in DOCs. There is an ethical imperative to prioritize QoL research in this patient population, to provide evidence to inform treatment, research, and end of life decisions. A minimalist and pragmatic model of QoL is proposed, targeting positive and negative affect as domains for which there is po- tential to reach across the communication gap, and restore to these voiceless persons some measure of control. (shrink)
Framing the Debate: Concussion and Mild Traumatic Brain Injury.L. Syd M.Johnson,Brad Partridge &Frédéric Gilbert -2014 -Neuroethics 8 (1):1-4.detailsConcussion and Mild Traumatic Brain Injury affect millions of people worldwide. mTBI has been called the “signature injury” of the recent conflicts in Iraq and Afghanistan, affecting thousands of active duty service men and women, and veterans. Sport-related concussion represents a significant public health problem, with elite and professional athletes, and millions of youth and amateur athletes worldwide suffering concussions annually. These brain injuries have received scant attention from neuroethicists, and the focus of this special issue is on defining the (...) ethical considerations and developing and elucidating the neuroethical contributions to the discussion about concussion and mTBI. (shrink)
Stable value sets, psychological well-being, and the disability paradox: ramifications for assessing decision making capacity.L. Syd M.Johnson -2013 -American Journal of Bioethics Neuroscience 4 (4):24-25.detailsThe phenomenon whereby severely disabled persons self-report a higher than expected level of subjective well-being is called the “disability paradox.” One explanation for the paradox among brain injury survivors is “response shift,” an adjustment of one’s values, expectations, and perspective in the aftermath of a life-altering, disabling injury. The high level of subjective well-being appears paradoxical when viewed from the perspective of the non-disabled, who presume that those with severe disabilities experience a quality of life so poor that it might (...) make their lives not worth living. This presumption has profound consequences, for it may inform end-of-life choices made in advance directives, or influence decisions made by surrogates on behalf of persons who are unable to direct their own medical treatment. -/- Peterson et al propose a cautious, well-considered plan to use fMRI-based brain-computer interfaces to assess the decision making capacity of covertly aware, behaviorally non-responsive individuals who retain high levels of preserved cognition. Their plan, if it succeeds, could eventually restore autonomy and empower some severely disabled persons, allowing them to participate in clinical decision making. Peterson et al discuss possible in-principle objections to their proposal, among them the “argument from psychological health,” and the “changing sets of values” objection. These objections both presume that deviations from a pre-injury norm could indicate diminished decision making capacity. This presumption threatens the autonomy of the patient who is capable of making decisions, but whose post-injury decisions appear to diverge from pre-injury preferences or values. In light of the potential for response shift, and the disability paradox, it should not be inferred that changes in values or preferences are unreflective of the true current preferences of a brain-injured person, nor are they conclusive evidence of diminished capacity. Presuming diminished capacity on the basis of unexpected or unconventional preferences has, in the past, been used to disempower patients whose autonomy and capacity would not have been doubted had they made choices that accorded with the expectations or values of others. We must be cautious, and vigilant, to prevent similarly diminishing the autonomy of covertly aware, behaviorally non-responsive individuals on the basis of empirically and ethically questionable inferences about their decision making capacity. (shrink)
Community perspectives on the benefits and risks of technologically enhanced communicable disease surveillance systems: a report on four community juries.Chris Degeling,Stacy M. Carter,Antoine M. van Oijen,Jeremy McAnulty,Vitali Sintchenko,Annette Braunack-Mayer,Trent Yarwood,JaneJohnson &Gwendolyn L. Gilbert -2020 -BMC Medical Ethics 21 (1):1-14.detailsBackground Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities in (...) New South Wales, Australia to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. (shrink)
Integral Field Spectroscopy of the Low-mass Companion HD 984 B with the Gemini Planet Imager.MaraJohnson-Groh,Christian Marois,Robert J. De Rosa,Eric L. Nielsen,Julien Rameau,Sarah Blunt,Jeffrey Vargas,S. Mark Ammons,Vanessa P. Bailey,Travis S. Barman,Joanna Bulger,Jeffrey K. Chilcote,Tara Cotten,René Doyon,Gaspard Duchêne,Michael P. Fitzgerald,Kate B. Follette,Stephen Goodsell,James R. Graham,Alexandra Z. Greenbaum,Pascale Hibon,Li-Wei Hung,Patrick Ingraham,Paul Kalas,Quinn M. Konopacky,James E. Larkin,Bruce Macintosh,Jérôme Maire,Franck Marchis,Mark S. Marley,Stanimir Metchev,Maxwell A. Millar-Blanchaer,Rebecca Oppenheimer,David W. Palmer,Jenny Patience,Marshall Perrin,Lisa A. Poyneer,Laurent Pueyo,Abhijith Rajan,Fredrik T. Rantakyrö,Dmitry Savransky,Adam C. Schneider,Anand Sivaramakrishnan,Inseok Song,Remi Soummer,Sandrine Thomas,David Vega,J. Kent Wallace,Jason J. Wang,Kimberly Ward-Duong,Sloane J. Wiktorowicz &Schuyler G. Wolff -2017 -Astronomical Journal 153 (4):190.details© 2017. The American Astronomical Society. All rights reserved.We present new observations of the low-mass companion to HD 984 taken with the Gemini Planet Imager as a part of the GPI Exoplanet Survey campaign. Images of HD 984 B were obtained in the J and H bands. Combined with archival epochs from 2012 and 2014, we fit the first orbit to the companion to find an 18 au orbit with a 68% confidence interval between 14 and 28 au, an eccentricity (...) of 0.18 with a 68% confidence interval between 0.05 and 0.47, and an inclination of 119°with a 68% confidence interval between 114°and 125°. To address the considerable spectral covariance in both spectra, we present a method of splitting the spectra into low and high frequencies to analyze the spectral structure at different spatial frequencies with the proper spectral noise correlation. Using the split spectra, we compare them to known spectral types using field brown dwarf and low-mass star spectra and find a best-fit match of a field gravity M6.5 ±1.5 spectral type with a corresponding temperature of K. Photometry of the companion yields a luminosity of log=2.88 ± 0.07 dex with DUSTY models. Mass estimates, again from DUSTY models, find an age-dependent mass of 34 ±1 to 95 ±4 M Jup. These results are consistent with previous measurements of the object. (shrink)
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