A model is described for implementing a program in research ethics education in the face of federal and institutional mandates and current resource, disciplinary, and infrastructure limitations. Also discussed are the historical background, content and evaluation process of the workshop at the heart of the program, which reaches a diverse group of over 250 students per year—from first-year graduate students in basic research labs to clinical fellows. The workshop addresses central issues in both everyday laboratory ethics and in larger societal (...) questions. Goals include improving overall awareness of ethics guidelines and philosophy and enhancing skills in identifying and then analyzing the ethical components of situations. Pedagogies used and their effectiveness and that of the overall workshop and extended program are addressed. Programs like these have initiated a shift in the culture of basic research, which is a critical need given the current atmosphere. (shrink)

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

The Human Fertilisation and Embryology Authority have recently granted a licence to perform preimplanation genetic diagnosis (PGD) for the homozygous form of familial hypercholesterolaemia (FH), explicitly excluding its use for the heterozygous form. The grounds for such decisions centre on how serious a condition is thought to be as well as on the availability of effective treatment, and decisions are made on a case-by-case basis. The case for licensing homozygous FH is discussed and compared with other cases, and the case (...) for making a distinction between PGD for homozygous and heterozygous FH is also examined. Testing for homozygous FH raises difficult issues of non-disclosure of results for heterozygous FH. Fears that this decision may represent a ‘slippery slope’ to more widespread testing are argued to be overstated. (shrink)

This article details day-to-day ethics issues facing MBAs who occupy entry-level and mid-level management positions and offers defined examples of the stressors these managers face. The study includes lower-level managers, essentially excluded from extant literature, and focuses on workplace behaviors both undertaken and observed. Results indicate that pressures from internal organization sources, and ambiguity in letter versus spirit of rules, account for over a third of the most frequent unethical situations encountered, and that most managers did not expect to face (...) those issues. Various contextual factors accounted for 32% of the organizational factors that affected decisions. We discuss implications for the workplace, especially the unique ethics challenges for newer managers. (shrink)

This article details day-to-day ethics issues facing MBAs who occupy entry-level and mid-level management positions and offers defined examples of the stressors these managers face. The study includes lower-level managers, essentially excluded from extant literature, and focuses on workplace behaviors both undertaken and observed. Results indicate that pressures from internal organization sources, and ambiguity in letter versus spirit of rules, account for over a third of the most frequent unethical situations encountered, and that most managers did not expect to face (...) those issues. Various contextual factors accounted for 32% of the organizational factors that affected decisions. We discuss implications for the workplace, especially the unique ethics challenges for newer managers. (shrink)

BackgroundCommunity engagement is increasingly promoted as a marker of good, ethical practice in the context of international collaborative research in low-income countries. There is, however, no widely agreed definition of community engagement or of approaches adopted. Justifications given for its use also vary. Community engagement is, for example, variously seen to be of value in: the development of more effective and appropriate consent processes; improved understanding of the aims and forms of research; higher recruitment rates; the identification of important ethical (...) issues; the building of better relationships between the community and researchers; the obtaining of community permission to approach potential research participants; and, the provision of better health care. Despite these diverse and potentially competing claims made for the importance of community engagement, there is very little published evidence on effective models of engagement or their evaluation.MethodsIn this paper, drawing upon interviews with the members of a Community Advisory Board on the Thai-Myanmar border, we describe and critically reflect upon an approach to community engagement which was developed in the context of international collaborative research in the border region.Results and conclusionsDrawing on our analysis, we identify a number of considerations relevant to the development of an approach to evaluating community engagement in this complex research setting. The paper also identifies a range of important ways in which the Community Advisory Board is in practice understood by its members to have morally significant roles and responsibilities beyond those usually associated with the successful and appropriate conduct of research. (shrink)

Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study.

Misattributed paternity or ‘false’ paternity is when a man is wrongly thought, by himself and possibly by others, to be the biological father of a child. Nowadays, because of the progression of genetics and genomics the possibility of finding misattributed paternity during familial genetic testing has increased. In contrast to other medical information, which pertains primarily to individuals, information obtained by genetic testing and/or pedigree analysis necessarily has implications for other biologically related members in the family. Disclosing or not a (...) misattributed paternity has a number of different biological and social consequences for the people involved. Such an issue presents important ethical and deontological challenges. The debate centres on whether or not to inform the family and, particularly, whom in the family, about the possibility that misattributed paternity might be discovered incidentally, and whether or not it is the duty of the healthcare professional to disclose the results and to whom. In this paper, we consider the different perspectives and reported problems, and analyse their cultural, ethical and legal dimensions. We compare the position of HCPs from an Italian and British point of view, particularly their role in genetic counselling. We discuss whether the Oviedo Convention of the Council of Europe can be seen as a basis for enriching the debate. (shrink)

ObjectiveTo increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.SettingThree tertiary hospitals in metropolitan Brisbane, Australia.DesignQualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic (...) analysis.ResultsDoctors’ perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.ConclusionsDoctors’ ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors’ role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making. (shrink)

In this article, we explore the world's response to the increasing impact of carbon emissions on the sobering threat posed by global warming: the carbon offset market. Though the market is a relatively new one, numerous offset providers have quickly emerged under both regulated and voluntary regimes. Owing to the lack of technical literacy of some stakeholders who participate in the market, no common quality or certification structure has yet emerged for providers. To the contrary, the media warns that a (...) relative "cowboy" atmosphere prevails in the current environment, and that there are "widespread instances of people and organizations buying worthless credits that do not yield any reductions in carbon emissions" (Harvey and Fidler, Financial Times, 2007). At this point in the evolution of the market, only a handful of offset provider-rating schemes exist; and, even these systems leave consumers with few answers when they seek to find a means by which to ensure that the said systems are having their intended impact. The purpose of this article is, first, to provide a grounded understanding of the nature of the offset market, a tendency toward carbon neutrality as a possible point of equilibrium, and the ethical tensions that surround it from the perspective of the consuming public. Second, we outline the standards environment for offset providers to illustrate most effectively the need for a single set of criteria among providers that is readily understandable by the common consumer stakeholder. We then explore the differences among the providers and articulate the specific criteria upon which providers may be evaluated by this particular stakeholder constituency, by bringing together best practices based on currently available analyses. Finally, we share the results of preliminary data collection in connection with 117 offset providers and highlight early findings. These findings allow us comparing providers effectively and efficiently on a common scale that services both providers, who thereby have greater guidance for self-assessment purposes, as well as consumer stakeholders, who then have the ability to make useful and more informed choices about carbon emission reduction in the future. (shrink)

This study explores corporate social responsibility (CSR) by conducting a cross-cultural analysis of communication of CSR activities in a total of 16 U.S. and European corporations. Drawing on previous research contrasting two major approaches to CSR initiatives, it was proposed that U.S. companies would tend to communicate about and justify CSR using economic or bottom-line terms and arguments whereas European companies would rely more heavily on language or theories of citizenship, corporate accountability, or moral commitment. Results supported this expectation of (...) difference, with some modification. Specifically, results indicated that EU companies do not value sustainability to the exclusion of financial elements, but instead project sustainability commitments in addition to financial commitments. Further, U.S.-based companies focused more heavily on financial justifications whereas EU-based companies incorporated both financial and sustainability elements in justifying their CSR activities. In addition, wide variance was found in both the prevalence and use of specific CSR-related terminology. Cross-cultural distinctions in this use create implications with regard to measurability and evidence of both strategic and bottom-line impact. Directions for further research are discussed. (shrink)

This paper argues that professionals who make boundary-related decisions should be guided by relationship-based practice. In our roles as service users and professionals, drawing from our lived experiences of professional relationships, we argue we need to move away from distance-based practice. This includes understanding the boundary stories and narratives that exist for all of us – including the people we support, other professionals, as well as the organisations and systems within which we work. When we are dealing with professional boundary (...) issues, we should centre relationship-building skills that are central to many other aspects of our work. Skills that foster relationships at all levels – between professionals, service users, and services – need to be revalued. Our final recommendation is to create, develop, and foster safer spaces within and outside of organisations, as well as inter-professionally, for the discussion and exploration of boundary-related issues and practice. We are interested in hearing from those with experiences of being marginalised by boundaries so that they can inform a reshaping of our collective ideas around boundary related practices. To foster relationship-based practices in organisations, we have outlined several recommendations here; however, we recognize that these do not go far enough, and that collective action is needed to inform systemic change. (shrink)

Objectives To determine the role played by law in medical specialists9 decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. Design Cross-sectional postal survey of medical specialists. Setting The two largest Australian states by population. Participants 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. Main outcome measures Compliance with law and the impact of legal knowledge (...) on compliance. Results 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. Conclusions Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law in end-of-life care. (shrink)

Aims: To assess patient receipt of written information. To ensure patients understand the written information about a resuscitation policy and to determine whether they disapproved of or had concerns about the policy. Methods: All admissions to four wards of the hospital were approached for an interview. A set questionnaire was asked by one of 2 interviewers. Results: 72% of 572 admissions were interviewed. Refusal accounted for only 2 of the people not interviewed. 11% were unable to advocate for themselves by (...) reason of mental incompetence, inability to communicate or impairment secondary to their illness. Of the 401 interviewed only 49% recalled receiving the patient information booklet. Few patients (17%) recalled reading the information in the patient information booklet. They were all then given the paragraph about the hospital’s resuscitation policy. 352 were asked their understanding and only 61% demonstrated that they understood the paragraph. 91% of all 401 patients approved of the hospital having the option of DNR orders. 31% of people however had concerns related to DNR orders. These are discussed. Conclusions: Many acutely unwell patients are unable to advocate for themselves. Written information is a poor method of communicating with patients. There was limited receipt of the information and many misunderstood the paragraph about the hospitals resuscitation policy. There was a wide range of patient thoughts and concerns expressed. (shrink)

It is well known that when resolution occurs in the stichic iambics and trochaics of tragedy word-end is not found between the two shorts so produced: w or, more accurately, that the first short of resolution must not be the last syllable of a polysyllabic word. Moreover, the syllables in resolution most often form part of the same word as the following short or anceps, e.g.: Ion 1143.

Traditional forms of farming, herding, and fishing are remarkably adapted to African conditions but these traditional approaches are being overtaken by modern pressures, particularly population growth. According to a report published by the Office of Technology Assessment (OTA), a nonpartisan analytical support agency of the U. S. Congress, one promising way to help African farmers and herders would be for development assistance organizations to focus more attention on the various forms of low-resource agriculture that predominate in Africa.In keeping with OTA's (...) mission and primary audience, “Enhancing Agriculture in Africa: A Role for U. S. Development Assistance” (1988) is a policy-oriented synthesis of available technical information. The report provides Congress with a range of options that, if pursued, could help Africans enhance agriculture, increase their food security, and improve their lives.This paper is drawn from the larger OTA report, and it focuses on the role technology might play in enhancing low-resource agriculture. Readers should see the full assessment (OTA, 1988) for more information on policy considerations; the specific technologies mentioned; or a complete list of advisory panel members, workshops and participants, and commissioned papers.OTA's report comes at a critical time: for a variety of reasons—ranging from changing values to increased budget constraints—U. S. foreign assistance policy is undergoing a fundamental reevaluation. This review of the potential of low-resource agriculture, and options the United States might pursue to enhance this approach, was intended to aid in this reevaluation. (shrink)

2. Thesis 2 I accept insofar as it asserts the relation of possibility to actuality to be a fundamental aspect of things. This relation is sui generis.

As described by the ancient metricians, catalexis is a matter of arithmetic rather than rhythm. They develop the idea in their usual way, mechanically and mathematically, adding and subtracting elements, so as to produce ‘brachycatalexis’ and ‘hypercatalexis’. These are now mere metrical-glossary terms, but in catalexismodern metricians have seen a genuine relationship between cola and a rhythmic effect more or less comprehensible even to us. Wilamowitz, T.D. Goodell, and A.M. Dale explore the concept to some extent, but current hand books (...) and general treatises give it only perfunctory and superficial treatment, while casual appearances of the term offer the reader glimpses of a theoretical substructure which hasnot been explicitly and coherently explained. (shrink)

Community engagement is increasingly promoted as a marker of good, ethical practice in the context of international collaborative research in low-income countries. There is, however, no widely agreed definition of community engagement or of approaches adopted. Justifications given for its use also vary. Community engagement is, for example, variously seen to be of value in: the development of more effective and appropriate consent processes; improved understanding of the aims and forms of research; higher recruitment rates; the identification of important ethical (...) issues; the building of better relationships between the community and researchers; the obtaining of community permission to approach potential research participants; and, the provision of better health care. Despite these diverse and potentially competing claims made for the importance of community engagement, there is very little published evidence on effective models of engagement or their evaluation. (shrink)

A collection of personal narratives and essays, Living Professionalism is designed to help medical students and residents understand and internalize various aspects of professionalism. These essays are meant for personal reflection and above all, for thoughtful discussion with mentors, with peers, with others throughout the health care provider community who care about acting professionally.

The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...) Consortium, one of the first international collaborative genomics research projects in Africa. (shrink)

Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad consent (...) to data sharing in January 2016. Between February and August 2017 qualitative data were collected at two sites, Bangkok and the Thai-Myanmar border town of Mae Sot. We conducted eighteen semi-structured interviews. We also conducted four focus group discussions with a total of nineteen people. Descriptive and thematic coding informed analysis of aspects of data sharing that are considered most important to inform participants about, and the best ways to explain complex and abstract topics relating to data sharing. The findings demonstrated that clinical trial participants prioritise information about the potential benefits and harms of data sharing. Stakeholders made multiple suggestions for clarifying information provided about data sharing on such topics. There was significant variation amongst stakeholders’ perspectives about how much information should be provided about data sharing, and it was clear that effective information provision should be responsive to the study, the study population, the individual research participant and the research context. Effectively communicating about data sharing with research participants is challenging in practice, highlighting the importance of robust and effective data sharing governance in this context. Broad consent should incorporate effective and efficient explanations of data sharing to promote informed decision-making, without impeding research participants’ understandings of key aspects of the research from which data will be shared. Further work is required to refine both the development of core information about data sharing to be provided to all research participants, and appropriate solutions for context specific-challenges arising when explaining data sharing. (shrink)

Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data (...) to support drug registration applications. We also encountered significant resource constraints which required the development of appropriate human resources and infrastructure. We suggest a research agenda to promote responsible and equitable data sharing while safeguarding the rights and interests of research participants and researchers. (shrink)