Large-scale sequencing tests, including whole-exome and whole-genome sequencing, are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute and National Cancer Institute have funded studies on clinical and research sequencing under (...) the Clinical Sequencing Exploratory Research program as well as studies on return of results. Most of these studies use sequencing in real-world clinical settings and collect data on both the application of sequencing and the impact of receiving genomic findings on study participants. They are occurring in the context of controversy over how to obtain consent for exome and genome sequencing. (shrink)

In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of the therapeutic misconception — have become (...) important policy issues over the last 20 years because of the ways they have been magnified by genomic research efforts. Research that examines the ethical, legal, and social implications of human genomics research has become a burgeoning international field of scholarship over the last 20 years, thanks in part to its support first by the genome research funding bodies in the U.S. and then by national science agencies in other countries. (shrink)

Though antiretroviral therapy is the standard of care for people living with HIV, its treatment limitations, burdens, stigma and costs lead to continued interest in HIV cure research. Early-phase cure trials, particularly those that include analytic treatment interruption, involve uncertain and potentially high risk, with minimal chance of clinical benefit. Some question whether such trials should be offered, given the risk/benefit imbalance, and whether those who choose to participate are acting rationally. We address these questions through a longitudinal decision-making study (...) nested in a Thai acute HIV research cohort. In-depth interviews revealed central themes about decisions to join. Participants felt they possessed an important identity as members of the acute cohort, viewing their bodies as uniquely suited to both testing and potentially benefiting from HIV cure approaches. While acknowledging risks of ATI, most perceived they were given an opportunity to interrupt treatment, to test their own bodies and increase normalcy in a safe, highly monitored circumstance. They were motivated by potential benefits to themselves, the investigators and larger acute cohort, and others with HIV. They believed their own trial experiences and being able to give back to the community were sufficient to offset participation risks. These decisions were driven by the specific circumstances experienced by our participants. Judging risk/benefit ratios without appreciating these lived experiences can lead to false determinations of irrational decision- making. While this does not minimise vital oversight considerations about risk reduction and protection from harm, it argues for inclusion of a more participant-centered approach. (shrink)

Abstractabstract:Birth certificates typically designate parents as "mothers" or "fathers," although some US states offer nongendered designations. The authors argue that gendered characterizations offer scant legal or moral value and that states should move to degender parental status on birth certificates but retain that information in registrations of birth. Registrations of birth identify the person giving birth to a child, when, and where, and they report demographic and health information useful for civic and public health purposes. Birth certificates typically report a (...) child's name, sex, date and location of birth, and parentage so far as known. As documents establishing parents' standing in relation to children and vice versa, as well as age and presumptive citizenship, birth certificates add no legal or moral value by gendering parents. Gendering parents on birth certificates obliges the state to rely on exclusionary criteria of "mother" and "father." By contrast, degendering parental status withdraws the need for such criteria and confers benefits on people with transgender and nonbinary identities, as well as undercutting any problematic presumption that parents have responsibilities to their children qua mother or qua father. (shrink)

The advance of technology has influenced marketing in a number of ways that have ethical implications. Growth in use of the Internetand e-commerce has placed electronic “cookies,” spyware, spam, RFIDs, and data mining at the forefront of the ethical debate. Some marketers have minimized the significance of these trends. This overview paper examines these issues and introduces the two articles that follow. It is hoped that these entries will further the important “marketing and technology” ethical debate.

Integrity is a central topic in business ethics, and in the world of business it is quite possibly the most commonly cited morally desirable trait. But integrity is conceived in widely differing ways, and as often as it is discussed in the literature and given a central place in corporate ethics statements, the notion is used so variously that its value in guiding everyday conduct may be more limited than is generally supposed. Two central questions for this paper are what (...) work the notion does and whether it does any ethical work that is not done better by other concepts. In pursuing these questions the paper explores the most plausible range of understandings of integrity found in recent literature, considers in what sense it is a virtue, and proposes a strategy of clarification and interpretation that can facilitate both ethical reflection and the guidance of moral conduct in business. (shrink)

Introduction The provision of abortion services in the Republic of Ireland is legally restricted. Recent legislation that has been implemented allows for abortion if there is a real and substantial risk to the woman's life, but in general Irish women must travel abroad for abortion services. The aims of this study were to investigate the clinical experiences of Irish obstetric non-consultant hospital doctors that work in this environment and to assess their attitudes towards termination of pregnancy. Methods We conducted an (...) online cross-sectional descriptive survey of 184 Irish obstetric NCHDs. Quantitate and qualitative analysis was performed. Results There was a 28% response rate. 88% of respondents thought that ToP should be permitted for fatal fetal abnormality if the parents choose, 96% if the woman's health is severely affected and 86% in cases of rape and incest. Over 90% of respondents believed a woman's health suffers because of the need to travel abroad to undergo a ToP. Physical, psychological and social reasons were explored. The research also highlights that obstetric trainees are actively involved in the provision of preabortion and postabortion care. Conclusions The clinical experiences and opinions of the respondents suggest that the current legal availability of abortion in Ireland is insufficient to guide best clinical practice and does not represent the views of those that provide obstetric care. (shrink)

This paper responds to a recent claim by Shrader-Frechette that current particle physics, with its essentially atomist paradigm, is in a state of Kuhnian crisis. We respond to Shrader-Frechette's claim in two ways: first, we argue directly against much of the evidence used by Shrader-Frechette as indicators of Kuhnian crisis; second, we question Shrader-Frechette's application of Kuhnian categories to current research in general, pointing out the dangers inherent in such an analysis.

This book explores images of schoolteachers in America from the beginning of the 20th century to the present, using a wide range of approaches to scholarship and writing. It is intended for both experienced and aspiring teachers to use as a springboard for discussion and reflection about the teaching profession and for contemplating these questions: _ What does it mean to be a teacher? What has influenced and sustained our beliefs about teachers? New in the second edition_ * The focus (...) is shifted to the teaching profession as the 21st century unfolds. * The volume continues to explore teacher images through various genres--oral history, narrative, literature, and popular culture. In the second edition, the authors place more emphasis on the social-political context that has shaped teachers' daily experiences and the teaching profession itself. In the study of teacher images and schooling, the essays draw from feminist research methods and the critical tradition in educational inquiry to probe issues of power and authority, race, social class, and gender. * The emphasis is on the multidimensionality of teacher images rather than normative characterizations. * Six totally new chapters have been written for this new edition: an "invented interview" spanning 100 years of school teaching; portraits of progressive activist teachers; an exploration of teachers in fiction for young adults; a retrospective of the satirical cartoon show, _The Simpsons_; a study of crusading and caring teachers in films; and an overview of progressive classroom practices in "the new millennium." Seven chapters have been thoroughly revised to reflect current scholarship and the authors' evolving knowledge and interests. (shrink)

We examine two different descriptions of the behavioral functions of the hippocampal system. One emphasizes spatially organized behaviors, especially those using cognitive maps. The other emphasizes memory, particularly working memory, a short-term memory that requires iexible stimulus-response associations and is highly susceptible to interference. The predictive value of the spatial and memory descriptions were evaluated by testing rats with damage to the hippocampal system in a series of experiments, independently manipulating the spatial and memory characteristics of a behavioral task. No (...) dissociations were found when the spatial characteristics of the stimuli to be remembered were changed; lesions produced a similar deficit in both spatial and nonspatial test procedures, indicating that the hippocampus was similarly involved regardless of the spatial nature of the task. In contrast, a marked dissociation was found when the memory requirements were altered. Rats with lesions were able to perform accurately in tasks that could be solved exclusively on the basis of reference memory. They performed at chance levels and showed no signs of recovery even with extensive postoperative training in tasks that required working memory. In one experiment all the characteristics of the reference memory and working memory procedures were identical except the type of memory required. Consequently, the behavioral dissociation cannot be explained by differences in attention, motivation, response inhibition, or the type of stimuli to be remembered. As a result of these experiments we propose that the hippocampus is selectively involved in behaviors that require working memory, irrespective of the type of material that is to be processed by that memory. (shrink)

Background: There is a growing interest in using cognitive behavioural therapy with people who have Asperger Syndrome and comorbid mental health problems. Aims: To examine whether modified group CBT for clinically significant anxiety in an AS population is feasible and likely to be efficacious. Method: Using a randomised assessor-blind trial, 52 individuals with AS were randomised into a treatment arm or a waiting-list control arm. After 24 weeks, those in the waiting-list control arm received treatment, while those initially randomised to (...) treatment were followed-up for 24 weeks. Results: The conversion rate for this trial was high, while attrition was 13%. After 24 weeks, there was no significant difference between those randomised to the treatment arm compared to those randomised to the waiting-list control arm on the primary outcome measure, the Hamilton Rating Scale for Anxiety. Conclusions: Trials of psychological therapies with this population are feasible. Larger definitive trials are now needed. Declaration of Interest: None Trial Registration: ISRCTN 30265294, UKCRN 8370. (shrink)

In this target article by Morain and Largent (2023), the authors focus on an investigator’s duty to patient-subjects specifically regarding incidental or collateral findings within the context of e...

The Covid‐19 pandemic has concentrated bioethics attention on the “lifeboat ethics” of rationing and fair allocation of scarce medical resources, such as testing, intensive care unit beds, and ventilators. This focus drives ethics resources away from persistent and systemic problems—in particular, the structural injustices that give rise to health disparities affecting disadvantaged communities of color. Bioethics, long allied with academic medicine and highly attentive to individual decision‐making, has largely neglected its responsibility to address these difficult “upstream” issues. It is time (...) to broaden our teaching, research, and practice to match the breadth of the field in order to help address these significant societal inequities and unmet health needs. (shrink)

This volume is an introduction to both newer and more established ideas in the growing field of critical phenomenology from a number of disciplinary perspectives.

The three important target articles make a strong case for regarding racism as a public health crisis. Each calls for advocacy by the bi...

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

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)