Genome-wide association studies raise important ethical and regulatory issues. This is particularly true of the current move toward broad sharing of genomic and phenotypic data. Our survey study examined the opinions of professionals involved in human subjects protection regarding genetic research review. The majority indicated that it is important for their institutional review board to offer guidance about developing and using a data repository or biobank that includes genetic data, and also about sharing this data with other investigators. Only one-third (...) of respondents reported that the National Institutes of Health policy regarding data sharing among researchers in genome-wide association studies is clear. Another third answered that they did not know whether this policy is clear. Findings from this study suggest a need for increased education for IRB professionals regarding the existing data sharing policy, collaboration among IRB professionals and researchers to define best practices, and further empirical research into prospective research participants’ information needs and preferences in the context of wide data sharing. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

1 Evidence-based policy requires researchers to provide the answers to ecological questions that are of interest to policy makers. To find out what those questions are in the UK, representatives from 28 organizations involved in policy, together with scientists from 10 academic institutions, were asked to generate a list of questions from their organizations. 2 During a 2-day workshop the initial list of 1003 questions generated from consulting at least 654 policy makers and academics was used as a basis for (...) generating a short list of 100 questions of significant policy relevance. Short-listing was decided on the basis of the preferences of the representatives from the policy-led organizations. 3 The areas covered included most major issues of environmental concern in the UK, including agriculture, marine fisheries, climate change, ecosystem function and land management. 4 The most striking outcome was the preference for general questions rather than narrow ones. The reason is that policy is driven by broad issues rather than specific ones. In contrast, scientists are frequently best equipped to answer specific questions. This means that it may be necessary to extract the underpinning specific question before researchers can proceed. 5 Synthesis and applications. Greater communication between policy makers and scientists is required in order to ensure that applied ecologists are dealing with issues in a way that can feed into policy. It is particularly important that applied ecologists emphasize the generic value of their work wherever possible. (shrink)

Human genomics is a translational field spanning research, clinical care, public health, and direct-to-consumer testing. However, law differs across these domains on issues including liability, consent, promoting quality of analysis and interpretation, and safeguarding privacy. Genomic activities crossing domains can thus encounter confusion and conflicts among these approaches. This paper suggests how to resolve these conflicts while protecting the rights and interests of individuals sequenced. Translational genomics requires this more translational approach to law.

Hastings Center Report, Volume 52, Issue S1, Page S3-S11, March‐April 2022.

A novel Protocol Ethics Tool Kit (‘Ethics Tool Kit’) has been developed by a multi-stakeholder group of the Multi-Regional Clinical Trials Center of Brigham and Women9s Hospital and Harvard. The purpose of the Ethics Tool Kit is to facilitate effective recognition, consideration and deliberation of critical ethical issues in clinical trial protocols. The Ethics Tool Kit may be used by investigators and sponsors to develop a dedicated Ethics Section within a protocol to improve the consistency and transparency between clinical trial (...) protocols and research ethics committee reviews. It may also streamline ethics review and may facilitate and expedite the review process by anticipating the concerns of ethics committee reviewers. Specific attention was given to issues arising in multinational settings. With the use of this Tool Kit, researchers have the opportunity to address critical research ethics issues proactively, potentially speeding the time and easing the process to final protocol approval. (shrink)

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing p...

There was a strong consensus in the commentaries that animals' performances in metacognition paradigms indicate high-level decisional processes that cannot be explained associatively. Our response summarizes this consensus and the support for the idea that these performances demonstrate animal metacognition. We amplify the idea that there is an adaptive advantage favoring animals who can – in an immediate moment of difficulty or uncertainty – construct a decisional assemblage that lets them find an appropriate behavioral solution. A working consciousness would serve (...) this function well. This explains why animals may have the functional equivalent of human declarative consciousness. However, like other commentators who were friendly to this equivalence, we approach carefully the stronger claims that animals' metacognitive performances imply full-blown self-awareness or phenomenal consciousness. We discuss the commentators' interesting ideas for future research, as well as their intriguing ideas about the evolution and development of metacognition and its relation to theory of mind. We also discuss residual confusions about existing research and remaining methodological issues. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

BackgroundIn the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort, participants underwent magnetic resonance imaging (MRI) of the brain, heart, and abdomen, that generated incidental findings (IFs). The approach to managing these unexpected results remain a complex issue. Our objectives were to describe the CAHHM policy for the management of IFs, to understand the impact of disclosing IFs to healthy research participants, and to reflect on the ethical obligations of researchers in future MRI studies.MethodsBetween 2013 and 2019, 8252 participants (...) (mean age 58 ± 9 years, 54% women) were recruited with a follow-up questionnaire administered to 909 participants (40% response rate) at 1-year. The CAHHM policy followed a restricted approach, whereby routine feedback on IFs was not provided. Only IFs of severe structural abnormalities were reported.ResultsSevere structural abnormalities occurred in 8.3% (95% confidence interval 7.7–8.9%) of participants, with the highest proportions found in the brain (4.2%) and abdomen (3.1%). The majority of participants (97%) informed of an IF reported no change in quality of life, with 3% of participants reporting that the knowledge of an IF negatively impacted their quality of life. Furthermore, 50% reported increased stress in learning about an IF, and in 95%, the discovery of an IF did not adversely impact his/her life insurance policy. Most participants (90%) would enrol in the study again and perceived the MRI scan to be beneficial, regardless of whether they were informed of IFs. While the implications of a restricted approach to IF management was perceived to be mostly positive, a degree of diagnostic misconception was present amongst participants, indicating the importance of a more thorough consent process to support participant autonomy.ConclusionThe management of IFs from research MRI scans remain a challenging issue, as participants may experience stress and a reduced quality of life when IFs are disclosed. The restricted approach to IF management in CAHHM demonstrated a fair fulfillment of the overarching ethical principles of respect for autonomy, concern for wellbeing, and justice. The approach outlined in the CAHHM policy may serve as a framework for future research studies.Clinical trial registrationhttps://clinicaltrials.gov/ct2/show/nct02220582. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors (...) then negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

At the forefront of international concerns about global legislation and regulation, a host of noted environmentalists and business ethicists examine ethical issues in consumption from the points of view of environmental sustainability, economic development, and free enterprise.

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

The Monographs produced by the International Agency for Research on Cancer (IARC) apply rigorous procedures for the scientific review and evaluation of carcinogenic hazards by independent experts. The Preamble to the IARC Monographs, which outlines these procedures, was updated in 2019, following recommendations of a 2018 expert Advisory Group. This article presents the key features of the updated Preamble, a major milestone that will enable IARC to take advantage of recent scientific and procedural advances made during the 12 years since (...) the last Preamble amendments. The updated Preamble formalizes important developments already being pioneered in the Monographs Programme. These developments were taken forward in a clarified and strengthened process for identifying, reviewing, evaluating and integrating evidence to identify causes of human cancer. The advancements adopted include strengthening of systematic review methodologies; greater emphasis on mechanistic evidence, based on key characteristics of carcinogens; greater consideration of quality and informativeness in the critical evaluation of epidemiological studies, including their exposure assessment methods; improved harmonization of evaluation criteria for the different evidence streams; and a single-step process of integrating evidence on cancer in humans, cancer in experimental animals and mechanisms for reaching overall evaluations. In all, the updated Preamble underpins a stronger and more transparent method for the identification of carcinogenic hazards, the essential first step in cancer prevention. (shrink)

Neither the range of potential results from genomic research that might be returned to participants nor future uses of stored data and biospecimens can be fully predicted at the outset of a study. Informed consent procedures require clear explanations about how and by whom decisions are made and what principles and criteria apply. To ensure trustworthy research governance, there is also a need for empirical studies incorporating public input to evaluate and strengthen these processes.

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

Physicists regularly invoke universal laws, such as those of motion and electromagnetism, to explain events. Biological and medical scientists have no such laws. How then do they acquire a reliable body of knowledge about biological organisms and human disease? One way is by repeatedly returning to, manipulating, observing, interpreting, and reinterpreting certain subjects—such as flies, mice, worms, or microbes—or, as they are known in biology, “model systems.” Across the natural and social sciences, other disciplinary fields have developed canonical examples that (...) have played a role comparable to that of biology’s model systems, serving not only as points of reference and illustrations of general principles or values but also as sites of continued investigation and reinterpretation. The essays in this collection assess the scope and function of model objects in domains as diverse as biology, geology, and history, attending to differences between fields as well as to epistemological commonalities. Contributors examine the role of the fruit fly Drosophila and nematode worms in biology, troops of baboons in primatology, box and digital simulations of the movement of the earth’s crust in geology, and meteorological models in climatology. They analyze the intensive study of the prisoner’s dilemma in game theory, ritual in anthropology, the individual case in psychoanalytic research, and Athenian democracy in political theory. The contributors illuminate the processes through which particular organisms, cases, materials, or narratives become foundational to their fields, and they examine how these foundational exemplars—from the fruit fly to Freud’s Dora—shape the knowledge produced within their disciplines. Contributors Rachel A. Ankeny Angela N. H. Creager Amy Dahan Dalmedico John Forrester Clifford Geertz Carlo Ginzburg E. Jane Albert Hubbard Elizabeth Lunbeck Mary S. Morgan Josiah Ober Naomi Oreskes Susan Sperling Marcel Weber M. Norton Wise. (shrink)

In light of scientific advances such as genomics, predictive diagnostics, genetically engineered agriculture, nuclear transfer cloning, and the manipulation of stem cells, the idea that genes carry predetermined molecular programs or blueprints is pervasive. Yet new scientific discoveries—such as rna transcripts of single genes that can lead to the production of different compounds from the same pieces of dna—challenge the concept of the gene alone as the dominant factor in biological development. Increasingly aware of the tension between certain empirical results (...) and interpretations of those results based on the orthodox view of genetic determinism, a growing number of scientists urge a rethinking of what a gene is and how it works. In this collection, a group of internationally renowned scientists present some prominent alternative approaches to understanding the role of dna in the construction and function of biological organisms. Contributors discuss alternatives to the programmatic view of dna, including the developmental systems approach, methodical culturalism, the molecular process concept of the gene, the hermeneutic theory of description, and process structuralist biology. None of the approaches cast doubt on the notion that dna is tremendously important to biological life on earth; rather, contributors examine different ideas of how dna should be represented, evaluated, and explained. Just as ideas about genetic codes have reached far beyond the realm of science, the reconceptualizations of genetic theory in this volume have broad implications for ethics, philosophy, and the social sciences. Contributors. Thomas Bürglin, Brian C. Goodwin, James Griesemer, Paul Griffiths, Jesper Hoffmeyer, Evelyn Fox Keller, Gerd B. Müller, Eva M. Neumann-Held, Stuart A. Newman, Susan Oyama, Christoph Rehmann-Sutter, Sahotra Sarkar, Jackie Leach Scully, Gerry Webster, Ulrich Wolf. (shrink)

Across the Euro-Atlantic world, political leaders have been mobilizing their bases with nativism, racism, xenophobia, and paeans to “traditional values,” in brazen bids for electoral support. How are we to understand this move to the mainstream of political policies and platforms that lurked only on the far fringes through most of the postwar era? Does it herald a new wave of authoritarianism? Is liberal democracy itself in crisis? In this volume, three distinguished scholars draw on critical theory to address our (...) current predicament. Wendy Brown, Peter E. Gordon, and Max Pensky share a conviction that critical theory retains the power to illuminate the forces producing the current political constellation as well as possible paths away from it. Brown explains how “freedom” has become a rallying cry for manifestly un-emancipatory movements; Gordon dismantles the idea that fascism is rooted in the susceptible psychology of individual citizens and reflects instead on the broader cultural and historical circumstances that lend it force; and Pensky brings together the unlikely pair of Tocqueville and Adorno to explore how democracies can buckle under internal pressure. These incisive essays do not seek to smooth over the irrationality of the contemporary world, and they do not offer the false comforts of an easy return to liberal democratic values. Rather, the three authors draw on their deep engagements with nineteenth–and twentieth–century thought to investigate the historical and political contradictions that have brought about this moment, offering fiery and urgent responses to the demands of the day. (shrink)

This special edition of JLME celebrates the life of Charity Scott, Professor Emerita and Founding Director of the Center for Law, Health & Society at Georgia State University College of Law.

Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child’s maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment.First, I place deference to grandparents as decision makers in the context of surrogate decision making more generally.Second, the (...) maternal grandfather’s ardent refusal of treatment and his rationale appeared to be inconsistent with the beliefs expressed by other family members and by members of the same Amish community, leading members of the medical team to question whether refusal of treatment should be treated differently when it appears to be based on the idiosyncratic beliefs of an individual rather than on community-wide values.Third, the medical team perceived tension and dissension between the nonverbal behavior of some family members and the verbal statements made by the maternal grandfather, leading the team to question the parents’ true wishes and debate how to weigh nonverbal and indirect forms of communication.Finally, building upon the conclusions of these queries, I explore whether, if the child’s prognosis was less favorable or if he were to relapse later, the maternal grandfather should have been permitted to drive a decision to refuse further treatment. (shrink)

The two cases presented here may at first seem very different: one patient was an adult, making autonomous decisions for herself and her fetus; the other was a child too young to meaningfully participate in the most significant decisions regarding his health. In both cases, healthcare professionals had to determine the extent to which the parents of a dying fetus or child should be permitted to make agonizing choices about how long to maintain hope and what that death will look (...) like; and in both, health professionals’ prognostications influenced their judgments about the patients’ best interests and whether they were candidates for certain interventions. While members of both healthcare teams questioned the patients’ and families’ ability to objectively consider the risks and benefits, the families were focused on the need to be able to live with the decisions made, regardless of outcome. Clinicians expressed unwillingness to perform physical actions they felt were more likely to promote harm and suffering than benefit, and experienced attendant moral distress in the face of conflicting values. In this regard, these cases are mirror images: only in the first case did the clinician, an obstetrician, have sufficient professional authority to refuse to perform the desired intervention. In the second case, the clinicians who expressed the most distress regarding the patient’s trajectory were the nurses, who largely lacked similar autonomy. Viewed together, these cases share a core question: What does paternalism look like in the contemporary era? (shrink)

BackgroundOne of the next frontiers in HIV research is focused on finding a cure. A new priority includes people with HIV (PWH) with non-AIDS terminal illnesses who are willing to donate their bodies at the end-of-life (EOL) to advance the search towards an HIV cure. We endeavored to understand perceptions of this research and to identify ethical and practical considerations relevant to implementing it.MethodsWe conducted 20 in-depth interviews and 3 virtual focus groups among four types of key stakeholders in the (...) United States (PWH, biomedical HIV cure researchers, HIV clinicians, and bioethicists) to obtain triangulated viewpoints because little was known about the ethics of this topic. Each group was queried as to ethical considerations, safeguards, and protections for conducting HIV cure-related research at the EOL to ensure this research remains acceptable.ResultsAll four key stakeholder groups generally supported HIV cure-related research conducted at the EOL because of the history of altruism within the PWH community and the potential for substantial scientific knowledge to be gained. Our informants expressed that: (1) Strong stakeholder and community involvement are integral to the ethical and effective implementation, as well as the social acceptability of this research; (2) PWH approaching the EOL should not inherently be considered a vulnerable class and their autonomy must be respected when choosing to participate in HIV cure-related research at the EOL; (3) Greater diversity among study participants, as well as multi-disciplinary research teams, is necessitated by HIV cure-related research at the EOL; (4) The sensitive nature of this research warrants robust oversight to ensure a favorable risk/benefit balance and to minimize the possibility of therapeutic misconception or undue influence; and (5) Research protocols should remain flexible to accommodate participants’ comfort and needs at the EOL.ConclusionBecause of the ethical issues presented by HIV cure-related research at the EOL, robust ethical safeguards are of utmost importance. The proposed ethical and practical considerations presented herein is a first step in determining the best way to maximize this research’s impact and social value. More much inquiry will need to be directed towards understanding context-specific and cultural considerations for implementing EOL HIV cure research in diverse settings. (shrink)

Restrictive visitation policies produce inequities in healthcare that have meaningful consequences for patients’ health and well-being. There is a surplus of existing literature exploring the consequences of reduced visitation in the setting of pediatric patients lacking decision-making capacity, but relatively little scholarship addressing visitation restriction for less vulnerable adults possessing capacity. Here, we present the case of a patient who suffered serious complications of childbirth, during the delivery of her healthy newborn, leading to prolonged hospitalization. During her treatment course, she (...) was subsequently denied visitation with her newborn, who had been discharged from the hospital, and this had detrimental effects on her recovery. Hospital policies restricting visitation during the COVID-19 pandemic were intended to reduce the risk of disease exposure for both patients and staff, despite conflicting evidence demonstrating this benefit. In contrast, they often have negative effects on patient stress, mood, and physical recovery. The sequelae of this US-based case study argue the need for more holistic hospital visitation policies, placing a specific lens on adult patients receiving a visitation from their newborn children. (shrink)

Not long after matriculation—sometimes even before—medical students begin hearing the question, "So, what are you going into?" It can be heard as a colloquial version of a practical question, "To which type of residency are you planning to apply?" Some will evade the question, claiming, perhaps sincerely, to be fascinated by everything from radiology to geriatrics, open to all possible paths. Others will acknowledge that they enjoy or dread working with children, that they crave long-term relationships or bursts of adrenaline, (...) that they are drawn to the knife or sickened at the sight of blood. A smaller number will confess to having a clear vision of their futures, perhaps a desire to... (shrink)

An eighteen‐year‐old with sickle cell disease was admitted to the pediatric hematology service at his local children's hospital for management of an acute pain crisis, one of many such admissions. He had a good relationship with his primary hematologist and primary nurse, but with other health care providers, there was evident friction. Sometimes, he was simply rude, rolling over and pretending to sleep in response to questions about his symptoms. When frustrated or convinced that his pain was not being addressed (...) appropriately, he was prone to yelling and cursing at his nurses. After members of the health care team complained, their supervisor decided to transfer the patient to an adult general medicine service. Reasons cited for the transition included the stressful work environment created by the patient's actions, his refusal to follow directives from staff (although he was generally adherent to treatment), and the hypothetical harm to other young patients who might witness his behavior. Was this a just outcome? Is it ever permissible to deny access to pediatric care to a patient whose best interests would be served by it? Can access be withheld for “bad” behavior, and can transfer of care be wielded as a punishment? (shrink)

The kind of theological schools that prevail in the US today emerged as hubs of networks of voluntary societies in the early national period. Through a brief history of Lyman Beecher and Lane Theological Seminary, I show both the power of these networks of voluntary associations to connect free individuals and their role in the project of white Protestant settlement. Now every part of those networks is eroding. Critics who blame this erosion on narcissistic individuals understate the individualizing powers of (...) neoliberal orders. We cannot scold people back into community. Instead, we should begin with ideals that exist, in however ideological a form, in the present. Drawing on thinkers like Theodor Adorno, Ulrich Beck, Wendy Brown, Judith Butler, bell hooks, Alicia Garza, and Rowan Williams, I argue for a critical redemption of “authenticity” that could reorient theological schools and renew forms of sociality to which they are connected. (shrink)

Although parents are the default legal surrogate decision-makers for minor children in the U.S., shared decision making in a pluralistic society is often much more complicated, involving not just parents and pediatricians, but also grandparents, other relatives, and even community or religious elders. Parents may not only choose to involve others in their children’s healthcare decisions but choose to defer to another; such deference does not imply agreement with the decision being made and adds complexity when disagreements arise between surrogate (...) decision-makers for minor children and their physicians. I argue that clinicians and ethicists have a duty to consider voices marginalized by hierarchical structures, including but not limited to gender-based inequalities. This approach involves negotiating potential conflicts: between respecting differences of culture and religion, on one hand, and assuring that the wishes of those who are most invested in children’s lives are considered, on the other. (shrink)

Medicine is not merely a job that requires technical expertise, but a profession concerned with making the best decisions and recommendations with reference to, and in consultation with, the patient. This means that the skill set required for healthcare professionals in order to provide good care is a combination of scientific knowledge, technical aptitude, and affective qualities or virtues such as compassion and empathy.

Medical anthropologists have long recognized variation between cultures with regard to the locus of healing in different systems and traditions: that is, in some cultures, the human body is a “bounded physical unit” and healing is thus focused on the body alone. This perspective will be most familiar to Western health-care providers, and indeed, many providers do not imagine an alternative perspective. However, in many cultures, experiences of health, illness, disease, and healing are intricately connected with the social spheres. In (...) these contexts, healing practices and rituals may seek to address family dynamics, alter roles within a community, and resolve social rifts, and illness itself may be... (shrink)

This unique textbook utilizes an integrated, case-based approach to explore how the domains of bioethics, public health and the social sciences impact individual patients and populations. It provides a structured framework suitable for both educators (including course directors and others engaged in curricular design) and for medical and health professions students to use in classroom settings across a range of clinical areas and allied health professions and for independent study. The textbook opens with an introduction, describing the intersection of ethics (...) and public health in clinical practice and the six key themes that inform the book's core learning objectives, followed by a guide to using the book. It then presents 22 case studies that address a broad spectrum of patient populations, clinical settings, and disease pathologies. Each pair of cases shares a core concept in bioethics or public health, from community perspectives and end-of-life care to medical mistakes and stigma and marginalization. They engage learners in rigorous clinical and ethical reasoning by prompting readers to make choices based on available information and then providing additional information to challenge assumptions, simulating clinical decision-making. In addition to providing a unique, detailed clinical scenario, each case is presented in a consistent format, which includes learning objectives, questions and responses for self-directed learning, questions and responses for group discussion, references, and suggested further reading. All cases integrate the six themes of patient- and family-centered care; evidence-based practice; structural competency; biases in decision-making; cultural humility and awareness of the culture of medicine; and justice, social responsibility and advocacy. The final section discusses some challenges to evaluating courses and learning encounters that adopt the cases and includes a model framework for learner assessment. (shrink)

For many children with complex medical conditions, decisions regarding their goals of care lie in the zone of parental discretion. That is, clinicians appropriately recognize that in many cases whether to prioritize quantity of life or quality of life is a deeply personal, values-laden decision best made by those who are most deeply invested in the outcome. Once a family has committed to a goal, however, there may be new or ongoing conflict between parents and clinicians regarding the specific interventions (...) provided or not provided in support of that goal. To what extent is it ethically permissible for a seriously ill child’s surrogate decision makers to reject individual interventions that support their desired goal of care? This question might be best described thus: is pediatric healthcare “prix fixe,” in which clinicians help parents decide the best of one or more set combinations (“menus”) of interventions, or is it “à la carte,” in which parents are free to accept or reject each individual intervention? We argue that the concept of a “prix fixe” approach should be discussed with families early in the development of the clinical relationship, as an essential facet of shared decision making. (shrink)

Omnipresent calls for more women in university administration assume these women will prioritize using resources and power to increase female representation, especially in STEM fields where women are most underrepresented. However, empirical evidence is lacking for systematic differences in female versus male administrators’ attitudes. Do female administrators agree on which strategies are best, and do men see things differently? To answer this question, we explored United States college and university administrators’ opinions regarding policies, strategies, and structural changes in their organizations (...) designed to increase women professors’ representation and retention in STEM fields. A comprehensive review of past research yielded a database of potentially-effective, recommended policies (e.g., increasing emphasis on teaching, service, and administration during promotion reviews; stopping the tenure clock for childbearing; providing on-campus childcare; couples-hiring; sharing tenure lines; having more women chair search committees; setting gender quotas for promotion). A survey based on these recommended policies was sent to provosts, deans, associate deans, and department chairs of STEM fields at 96 public and private research universities (formerly called R1s) across the U.S. These administrators were asked to rate the quality and feasibility of each recommended policy; 474 provided data, of which 334 contained complete numerical data used in the analyses, so our results are based on a large, geographically diverse group of administrators at research universities. Our data revealed that female administrators perceived the 44 strategies to be higher in quality overall than did male administrators--but not higher in feasibility--with 9 policies perceived differently when rated by women versus men administrators, after imposing conservative statistical controls. There was broad general agreement on the relative rankings of the 44 policies in terms of their perceived quality. Overall, our national survey of U.S. administrators supported the assertion that placing women in administrative roles creates greater emphasis on the importance of enacting policies to attract and retain women in STEM. Topics of disagreement between women and men regarding strategy quality are important focuses of future policy and planning, because female administrators may have insights into how to retain women professors that male administrators do not share. (shrink)

This book's importance is derived from three sources: careful conceptualization of teacher induction from historical, methodological, and international perspectives; systematic reviews of research literature relevant to various aspects of teacher induction including its social, cultural, and political contexts, program components and forms, and the range of its effects; substantial empirical studies on the important issues of teacher induction with different kinds of methodologies that exemplify future directions and approaches to the research in teacher induction.

This introduction to the Common Knowledge symposium titled “Comparative Relativism” outlines a variety of intellectual contexts where placing the unlikely companion terms comparison and relativism in conjunction offers analytical purchase. If comparison, in the most general sense, involves the investigation of discrete contexts in order to elucidate their similarities and differences, then relativism, as a tendency, stance, or working method, usually involves the assumption that contexts exhibit, or may exhibit, radically different, incomparable, or incommensurable traits. Comparative studies are required to (...) treat their objects as alike, at least in some crucial respects; relativism indicates the limits of this practice. Jensen argues that this seeming paradox is productive, as he moves across contexts, from Lévi-Strauss's analysis of comparison as an anthropological method to Peter Galison's history of physics, and on to the anthropological, philosophical, and historical examples offered in symposium contributions by Barbara Herrnstein Smith, Eduardo Viveiros de Castro, Marilyn Strathern, and Isabelle Stengers. Comparative relativism is understood by some to imply that relativism comes in various kinds and that these have multiple uses, functions, and effects, varying widely in different personal, historical, and institutional contexts that can be compared and contrasted. Comparative relativism is taken by others to encourage a “comparison of comparisons,” in order to relativize what different peoples—say, Western academics and Amerindian shamans—compare things “for.” Jensen concludes that what is compared and relativized in this symposium are the methods of comparison and relativization themselves. He ventures that the contributors all hope that treating these terms in juxtaposition may allow for new configurations of inquiry. (shrink)

The paper examines the legal, ethical, and public policy issues involved in the Union Carbide gas leak in India which caused the deaths of over 3000 people and injury to thousands of people. The paper begins with a historical perspective on the operating environment in Bhopal, the events surrounding the accident, then discusses an international situation audit examining internal strengths and weaknesses, and external opportunities and threats faced by Union Carbide at the time of the accident. There is a discussion (...) of management of the various interests involved in international public relations and ethical issues. A review of the financial ratio analysis of the company prior and subsequent to the accident follows, then an examination of the second tragedy of Bhopal — the tragic failure of the international legal system to adequately and timely compensate victims of the accident.The paper concludes with recommendations towards public policy, as well as a call for congressional action regarding international safety of U.S. based multinational operations. (shrink)

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.

The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to (...) examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable. (shrink)