Despite a growing awareness within American biomedicine and bioethics that the social category “race” is of limited use in describing patients, some fields of medicine continue to use it interchangeably with, or instead of, the term “ethnicity.” Doing so reflects the assumption that social categories have a basis in physiology.

The disclosure of prognosis to terminally ill patients has emerged as a recent concern given greater demands for patient involvement in medical decision‐making in the United States. As part of the informed consent process, American physicians are legally and ethically obligated to provide information to such patients about the risks, benefits, and alternatives of all available treatment options including the use of experimental therapies. Although not legally required, the disclosure of a terminal prognosis is ethically justified because it upholds the (...) principle of self‐determination and enables patients to make treatment decisions consistent with their life goals. To understand oncologists’ attitudes about disclosing prognostic information to cancer patients with advanced disease, we interviewed fourteen oncologists and conducted one focus group of medical fellows. Although oncologists reported to disclose prognosis in terms of cancer not being curable, they tend to avoid using percentages to convey prognosis. Oncologists’ reported reluctance to disclosing prognosis was conveyed through the use of metaphors depicting the perceived violent impact of such information on patients. Oncologists’ reluctance to disclose prognosis and preserve patient hope are held in check by their need to ensure that patients have ‘realistic expectations’ about therapy. We discuss these data in light of the cultural, ethical, and legal dimensions of prognosis disclosure, patient hope and the doctor–patient relationship, and recommend ways to enhance the communication process. (shrink)

For more than a decade, Ellen Fox and her colleagues have proclaimed the importance of evaluating ethics consultation services (ECSs). In their article, “Ethics Consultation in United States Hospit...

A history of injustices to diverse groups of human subjects in medical research has resulted in concerted efforts by U.S. policymakers in the second half of the twentieth century to provide greater protection for future subjects. However, in the context of patient populations demanding better therapies, potential medical advances, and greater attention to issues of social justice, Kahn, Mastroianni, and Sugarman set out to reconceptualize the principle of justice in human subjects research to address these urgent concerns. In BeyondConsent, Kahn (...) and colleagues advance a framework of justice in terms of access to participation in research, instead of protection. Their worthy cause, developed out of collaboration on the White House Advisory Committee on Human Radiation Experiments, aims to demonstrate how previously unaddressed notions of justice now require greater consideration in research. Specifically, they emphasize how fairness requires a greater distribution of risks and benefits, and that The volume does not report new research findings but rather draws on multidisciplinary approaches, including law, medicine, philosophy, history, and health policy, to argue that justice must go beyond informed consent. The editors posit that this challenge to protectionism is necessary given the heightened urgency for patients to benefit from investigational therapies although they incur increased risks. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Living Organ Donors’ Stories: (Unmet) Expectations about Informed Consent, Outcomes, and CareElisa J. Gordon, Symposium EditorKeywordsEthics, informed consent, kidney, liver, living donor, narrative, transplantationLiving donor organ transplantation has become standard treatment for patients with end-stage kidney or end-stage liver disease. Live donors comprised approximately 5,769 (34%) and 247 (4%) of all kidney and liver transplants in 2011, respectively (OPTN/UNOS). The reasons why people donate, the perception that donating (...) does not entail a decision per se, and the attendant fears and anxieties living donors feel about donating, have all been previously well investigated (Lennerling, Forsberg, Meyer, & Nyberg, 2004; Papachristou, Walter, Frommer, & Klapp, 2010). But much less is known about how donors experienced the overall donation process including the donor evaluation, preparation, appreciation of risks, decision-making, informed consent, post-operative, recovery processes, and the impact of donating on all aspects of their life, from their point of view. Thus, a narrative approach is essential for gaining insights into these less well known phenomena.There is good reason to remain concerned about the safety and ethical basis of living donation considering that living donors undergo serious health risks for no direct medical benefit to themselves (Ethics Committee of the Transplantation Society, 2004; Laird, 2012; Neergaard, 2011; Ratner & Sandoval, 2010; Shelton, 2011). The situation raises serious ethical questions specifically about nonmaleficence and informed consent, and more broadly about using people as a means to an end. The absence of long-term information may not undermine a willing donor’s commitment to save a loved one’s life, but is certainly cause for concern among transplant clinicians who want to be sure to disclose information that may be material for donors in order to provide adequate informed consent. In other words, the disjuncture between what transplant clinicians find important to disclose to donors and what prospective donors need to know—which follows along the lines of what Elliot Mishler referred to as the ‘voice of medicine’ versus the ‘voice of the lifeworld’(1984)—seems to complicate donors’ preparation for donation. Donors’ stories are important for addressing these concerns by identifying risks that typically do not get reported in the scientific literature—perhaps owing to a different [End Page 1] conceptualization of what should be construed as noteworthy risks—as well as by demonstrating how personal situations can enhance or detract from the experience overall.This issue of Narrative Inquiry in Bioethics (NIB) affords a unique entrée into both the often heard and unheard stories of living organ donors. A set of topical areas were presented for the authors’ consideration that relate to the donation process in general and the informed consent process more specifically: whether donors were prepared to donate; comprehended what they were told; could have understood the process better, as well as, the impact of donation on health, employment, finances, and personal relationships (Table 1). When soliciting donors’ stories, every effort was made to include a full range of experiences—both good and bad—from a variety of donors: kidney donation, liver donation, adult-to-adult and adult-to-child donation, related, unrelated, directed and anonymous (also known as ‘altruistic’ or ‘good Samaritan’ donors), paired chain exchange, and list exchange (Table 2)—in order to present a balanced perspective on live donation. Additionally, this issue includes a full breadth of stories about the donor experience, ranging from positive to mixed to negative (Table 3). While donors were given tremendous leeway in what stories they told, they were asked to focus their narratives on the lesser known dimensions of donation—the experience of it. While additional stories from liver donors would have helped to underscore common concerns among liver donors, we only received a few. Some of the donors are themselves health care professionals, active in the United Network for Organ Sharing (UNOS) or their local OPO, or have leveraged their experiences to help others by becoming a donor buddy or donor advocate. Given that we received more stories than Click for larger view View full resolutionTable 1.Topical areas to address[End Page 2] Click for larger view View full resolutionTable 2.Forms of Living Donation Click for larger view View... (shrink)

Much attention has been devoted to ethical issues related to randomized controlled trials for HIV treatment and prevention. However, there has been less discussion of ethical issues surrounding families involved in observational studies of HIV transmission. This paper describes the process of ethical deliberation about how best to obtain informed consent from sex partners of injection drug users (IDUs) tested for HIV, within a recent HIV study in Eastern Europe. The study aimed to assess the amount of HIV serodiscordance among (...) IDUs and their sexual partners, identify barriers to harm reduction, and explore ways to optimize intervention programs. Including IDUs, either HIV-positive or at high risk for HIV, and their sexual partners would help to gain a more complete understanding of barriers to and opportunities for intervention. (shrink)

BackgroundNational guidelines require programmes use subjective assessments of social support when determining transplant suitability, despite limited evidence linking it to outcomes. We examined how transplant providers weigh the importance of social support for kidney transplantation compared with other factors, and variation by clinical role and personal beliefs.MethodsThe National survey of the American Society of Transplant Surgeons and the Society of Transplant Social Work in 2016. Using a discrete choice approach, respondents compared two hypothetical patient profiles and selected one for transplantation. (...) Conditional logistic regression estimated the relative importance of each factor; results were stratified by clinical role and beliefs.ResultsFive hundred and eighy-four transplant providers completed the survey. Social support was the second most influential factor among transplant providers. Providers were most likely to choose a candidate who had social support, always adhered to a medical regimen, and had a 15 years life expectancy with transplant. Psychosocial providers were more influenced by adherence and quality of life compared with medical/surgical providers, who were more influenced by candidates' life expectancy with transplant. For providers concerned with avoiding organ waste, social support was the most influential factor, while it was the least influential for clinicians concerned with fairness.ConclusionsSocial support is highly influential in listing decisions and may exacerbate transplant disparities. Providers’ beliefs and reliance on social support in determining suitability vary considerably, raising concerns about transparency and justice. (shrink)

Background The allocation of scarce deceased donor kidneys is a complex process. Transplant providers are increasingly relying on constructs such as frailty and cognitive function to guide kidney transplant (KT) candidate selection. Patient views of the ethical issues surrounding the use of such constructs are unclear. We sought to assess KT candidates’ attitudes and beliefs about the use of frailty and cognitive function to guide waitlist selection.Methods KT candidates were randomly recruited from an ongoing single-center cohort study of frailty and (...) cognitive function. Semi-structured interviews were conducted, and thematic analysis was performed. Inductively derived themes were mapped onto bioethics principles.Results Twenty interviews were conducted (65% contact rate, 100% participation rate) (60% male; 70% White). With respect to the use of frailty and cognitive function in waitlisting decisions, four themes emerged in which participants: (1) valued maximizing a scarce resource (utility); (2) prioritized equal access to all patients (equity); (3) appreciated a proportional approach to the use of equity and utility (precautionary utility); and (4) sought to weigh utility- and equity-based concerns regarding social support. While some participants believed frailty and cognitive function were useful constructs to maximize utility, others believed their use would jeopardize equity. Patients were uncomfortable with using single factors such as frailty or cognitive impairment to deny someone access to transplantation; participants instead encouraged using the constructs to identify opportunities for intervention to improve frailty and cognitive function prior to KT.Conclusions KT candidates’ values mirrored the current allocation strategy, seeking to balance equity and utility in a just manner, albeit with conflicting viewpoints on the appropriate use of frailty and cognitive impairment in waitlisting decisions. (shrink)

Understanding why individuals opt out of living donation is crucial to enhancing protections for all living donors and to identify modifiable barriers to donation. We developed an ethical approach to conducting research on individuals who opted out of living kidney donation and applied it in a small-scale qualitative study at one US transplant centre. The seven study participants had varied reasons for opting out, the most prominent of which was concern about the financial burden from lost wages during the postoperative (...) period. Several reported feeling alone during their decision-making process. Although no participants used an alibi, a centre-provided statement of non-eligibility to donate, all believed that centres should offer alibis to help preserve donor autonomy. Given the complexity of participants' decisions and the emotions they experienced before and after deciding not to donate, we suggest approaches for independent living donor advocates to support this population. This study demonstrates that research on individuals who opt out of donation is feasible and yields valuable insight into methods to improve the evaluation experience for potential living donors. (shrink)

BackgroundPeople with upper extremity amputations report receiving insufficient information about treatment options. Furthermore, patients commonly report not knowing what questions to ask providers. A question prompt sheet, or list of questions, can support patient-centered care by empowering patients to ask questions important to them, promoting patient-provider communication, and increasing patient knowledge. This study assessed information needs among people with UE amputations about UE vascularized composite allotransplantation and developed a UE VCA-QPS.MethodsThis multi-site, cross-sectional, mixed-methods study involved in-depth and semi-structured interviews with (...) people with UE amputations to assess information needs and develop a UE VCA-QPS. Qualitative data were analyzed by thematic analysis; quantitative data were analyzed by descriptive statistics. The initial UE VCA-QPS included 130 items across 18 topics.ResultsEighty-nine people with UE amputations participated. Most were male, had a mean age of 46 years, and had a unilateral and below-elbow amputation. Participants desired information about UE VCA eligibility, evaluation process, surgery, risks, rehabilitation, and functional outcomes. After refinement, the final UE VCA-QPS included 35 items, across 9 topics. All items were written at a ≤ 6th grade reading level. Most semi-structured interview participants reported being ‘completely’ or ‘very’ likely to use a UE VCA-QPS.ConclusionPeople with UE amputations have extensive information needs about UE VCA. The UE VCA-QPS aims to address patients’ information needs and foster patient-centered care. Future research should assess whether the UE VCA-QPS facilitates patient-provider discussion and informed decision-making for UE VCA. (shrink)

The goal of this study was to evaluate affective changes induced during mental imaging of instinctual action patterns. Subjects were first trained to simulate the bodily rhythms of laughter and crying and were then trained to image these processes without any movement. The mere imagination of the motor imagery of laughter and crying were sufficient to significantly facilitate happy and sad mood ratings as monitored by subjective self-report. In contrast, no changes in mood were reported while imaging the affectively neutral (...) task of walking. The work suggests that motor imagery is sufficient to modify emotional feelings, suggesting the feasibility of this method for brain imaging of emotional processes. (shrink)

This article argues that we could improve the design of research protocols by developing an awareness of and a responsiveness to the social contexts of all the actors in the research enterprise, including subjects, investigators, sponsors, and members of the community in which the research will be conducted. “Social context” refers to the settings in which the actors are situated, including, but not limited to, their social, economic, political, cultural, and technological features. The utility of thinking about social contexts is (...) introduced and exemplified by the presentation of a hypothetical case in which one central issue is limitation of the probability of injury to subjects by selection of individuals who are not expected to live long enough for the known risks of the study to become manifest as harms. Benefits of such considerations may include enhanced subject satisfaction and cooperation, community acceptance, and improved data quality, among other desirable consequences. (shrink)

Aims. Currently, methylphenidate (MPH, trade name Ritalin) is the most widely prescribed medication for attention deficit/hyperactivity disorder (ADHD). We examined the ability of repeated MPH administration to produce a sensitized appetitive eagerness type response in laboratory rats, as indexed by 50-kHz ultrasonic vocalizations (50-kHz USVs). We also examined the ability of MPH to reduce play behavior in rats which may be partially implicated in the clinical efficacy of MPH in ADHD. Design. 56 adolescent rats received injections of either 5.0 mg/kg (...) MPH, or vehicle each day for 8 consecutive days, and a week later received a challenge injection of either MPH or vehicle. Measurements. Both play behavior (pins) and 50-kHz USVs were recorded after each drug or vehicle administration. Results. MPH challenge produced a substantial 73% reduction in play behavior during the initial treatment phase, and during the last test (1 week post drug), 50-kHz USVs were elevated approximately threefold only in animals with previous MPH experience. Conclusions. These data suggest that MPH treatment may lead to psychostimulant sensitization in young animals, perhaps by increasing future drug-seeking tendencies due to an elevated eagerness for positive incentives. Further, we hypothesize that MPH may be reducing ADHD symptoms, in part, by blocking playful tendencies, whose neuro-maturational and psychological functions remain to be adequately characterized. (shrink)

Despite a large and multifaceted effort to understand the vast landscape of phenotypic data, their current form inhibits productive data analysis. The lack of a community-wide, consensus-based, human- and machine-interpretable language for describing phenotypes and their genomic and environmental contexts is perhaps the most pressing scientific bottleneck to integration across many key fields in biology, including genomics, systems biology, development, medicine, evolution, ecology, and systematics. Here we survey the current phenomics landscape, including data resources and handling, and the progress that (...) has been made to accurately capture relevant data descriptions for phenotypes. We present an example of the kind of integration across domains that computable phenotypes would enable, and we call upon the broader biology community, publishers, and relevant funding agencies to support efforts to surmount today's data barriers and facilitate analytical reproducibility. (shrink)

Published in 1913 as _La Philosophie Bergsonienne_, this incisive critique of the thought of Henri Bergson was Jacques Maritain's first book. In it he shows himself already to have an authoritative grasp of the thought of St. Thomas Aquinas and an uncanny ability to demonstrate its relevance to alternative philosophical systems such as that of Henri Bergson. Volume 1 in the series _The Collected Works of Jacques Maritain_, this edition faithfully reproduces the 1955 translation published by the Philosophical Library. It (...) would be difficult to overestimate Bergson’s role in extricating French philosophy from the deadening materialism that dominated the Sorbonne. It was that cultural milieu that brought Maritain and his wife Raïssa to the brink of suicide. They drew back for two major reasons. First were the lectures of Henri Bergson at the Collège de France, in which the Maritains found a defense of metaphysics, of the transcendent beyond the material, within which they could find meaning in life. The second reason was their conversion to Catholicism, a move they and many of their contemporaries made after being introduced to Bergson’s work. Soon after his conversion, Jacques Maritain immersed himself in the thought of Thomas Aquinas and was struck by the comparative weaknesses of Bergson. This book is Maritain’s relentless criticism of the philosophy of the man whose lectures had meant so much to him. Its ferocity marks it as a young man’s book, written in part to exorcize the defects of Bergson’s philosophy as they were understood by one now schooled in Thomism. Twenty-five years later, Maritain, while not retracting his criticisms, regretted their intemperance and, as a result, moderated his assessment of Bergson in a long preface to the second edition. In it, we find a philosopher who mastered his craft and a critic of rare perception and refinement. (shrink)

The authors examine the internal and external motivating factors behind the actions of the House Committee on Ethics members by looking at the procedural efficiency of the Committee on Ethics (or lack thereof), as a natural consequence of the committee members' implicit public policy actions.

The National Institutes of Health (NIH) invests over $37 billion per year in support of research to improve human health. All research funded by NIH that involves human subjects is subject to regulatory oversight, requiring institutions to staff and manage Institutional Review Boards (IRBs). IRB members, chairs, and the many associated human subjects protections oversight professionals who support the work of the IRB must navigate complex federal regulations issued by multiple agencies. This book is the industry standard reference work for (...) the research oversight community, providing comprehensive, understandable interpretations of the regulations, clear descriptions of the ethical principles on which the regulations are based, and practical best-practices guidelines for effectively implementing regulatory oversight. (shrink)

BackgroundKinarm Standard Tests is a suite of upper limb tasks to assess sensory, motor, and cognitive functions, which produces granular performance data that reflect spatial and temporal aspects of behavior. We have previously used principal component analysis to reduce the dimensionality of multivariate data using the Kinarm End-Point Lab. Here, we performed PCA using data from the Kinarm Exoskeleton Lab, and determined agreement of PCA results across EP and EXO platforms in healthy participants. We additionally examined whether further dimensionality reduction (...) was possible by using PCA across behavioral tasks.MethodsHealthy participants were assessed using the Kinarm EXO and EP. Four behavioral tasks were performed that quantified arm sensory and motor function, including position sense [Arm Position Matching ] and three motor tasks [Visually Guided Reaching, Object Hit, and Object Hit and Avoid ]. The number of components to include per task was determined from scree plots and parallel analysis, and rotation type was decided on a per-task basis. To assess agreement, we compared principal components across platforms using distance correlation. We additionally considered inter-task interactions in EXO data by performing PCA across all six behavioral assessments.ResultsBy applying PCA on a per task basis to data collected using the EXO, the number of behavioral parameters were substantially reduced by 58–75% while accounting for 76–87% of the variance. These results compared well to the EP analysis, and we found good-to-excellent agreement values between PCs from the EXO and those from the EP. Finally, we were able to reduce the dimensionality of the EXO data across tasks down to 16 components out of a total of 76 behavioral parameters, which represents a reduction of 79% while accounting for 73% of the total variance.ConclusionPCA of Kinarm robotic assessment appears to capture similar relationships between kinematic features in healthy individuals and is agnostic to the robotic platform used for collection. Further work is needed to investigate the use of PCA-based data reduction for the characterization of neurological deficits in clinical populations. (shrink)

An analytic cognitive style denotes a propensity to set aside highly salient intuitions when engaging in problem solving. We assess the hypothesis that an analytic cognitive style is associated with a history of questioning, altering, and rejecting supernatural claims, both religious and paranormal. In two studies, we examined associations of God beliefs, religious engagement, conventional religious beliefs and paranormal beliefs with performance measures of cognitive ability and analytic cognitive style. An analytic cognitive style negatively predicted both religious and paranormal beliefs (...) when controlling for cognitive ability as well as religious engagement, sex, age, political ideology, and education. Participants more willing to engage in analytic reasoning were less likely to endorse supernatural beliefs. Further, an association between analytic cognitive style and religious engagement was mediated by religious beliefs, suggesting that an analytic cognitive style negatively affects religious engagement via lower acceptance of conventional religious beliefs. Results for types of God belief indicate that the association between an analytic cognitive style and God beliefs is more nuanced than mere acceptance and rejection, but also includes adopting less conventional God beliefs, such as Pantheism or Deism. Our data are consistent with the idea that two people who share the same cognitive ability, education, political ideology, sex, age and level of religious engagement can acquire very different sets of beliefs about the world if they differ in their propensity to think analytically. (shrink)

Recent thinking within philosophy of mind about the ways cognition can extend has yet to be integrated with philosophical theories of emotion, which give cognition a central role. We carve out new ground at the intersection of these areas and, in doing so, defend what we call the extended emotion thesis: the claim that some emotions can extend beyond skin and skull to parts of the external world.

While openmindedness is often cited as a paradigmatic example of an intellectual virtue, the connection between openmindedness and truth is tenuous. Several strategies for reconciling this tension are considered, and each is shown to fail; it is thus claimed that openmindedness, when intellectually virtuous, bears no interesting essential connection to truth. In the final section, the implication of this result is assessed in the wider context of debates about epistemic value.