Objectives To determine the frequencies and types of limitation of medical treatment performed by physician members of the German Society for Palliative Medicine and to analyse the findings with respect to clinical and ethical aspects of end-of-life practices. Design Cross-sectional postal survey. Setting Data collection via the secretary of the German Society for Palliative Medicine using the German language version of the EURELD survey instrument. Subjects All 1645 physician members of the German Society for Palliative Medicine. Main outcome (...) measures Types and frequencies of limitation of treatment and possible determinants. Results 901 physicians participated in the study (response rate 55.8%). Participants reported limitation of treatment in 69.1% of cases. These decisions most often affected artificial nutrition (19%), chemotherapy (14%), antibiotics (11%) and medication other than antibiotics (11%). In the majority of eligible cases, physicians estimated the life-shortening effect of limitation of treatment to be <7 days. However, estimations differ depending on the medical measures in question. Bivariate statistical analysis indicated that withholding of treatment was performed significantly more frequently for patients aged ≥65 years (p=0.019). In addition, there were significant associations between the incidence of limitation of treatment and the different diseases reported by respondents as the underlying cause of death. Conclusion The findings of this study provide information on the current state of an ethically and clinically challenging aspect of clinical practice and can serve as a starting point for further interdisciplinary research on normative and empirical aspects of treatment decision-making at the end of life. (shrink)
BACKGROUND: It can be argued that the ethical conduct of research involves achieving a balance between the rights and needs of three parties-potential research participants, society, and researchers. Local Research Ethics Committees (LRECs) have a number of roles and functions in the research enterprise, but there have been some indications that LREC members, researchers and the public can have different views about these responsibilities. Any such differences are potential sources of disagreement and misunderstanding. OBJECTIVES: To compare the views (...) of LREC members, researchers and the public towards the roles and functions of LRECs. DESIGN: A questionnaire that contained items concerned with a variety of such roles was distributed to general practice patients (as proxies for potential research participants), researchers and LREC members. FINDINGS: While general practice patients believed that the main function of LRECs is to ensure that research participants come to no harm, LREC members were more concerned with the protection of participants' rights. There was also some disagreement between members and researchers with regard to the consideration of proposals on the grounds of scientific merit. CONCLUSIONS: Local Research Ethics Committee members need to be aware of potential differences in views, that they ought to make their priorities clear, and that membership of LRECs ought to reflect the views of both researchers and potential research participants. (shrink)
ABSTRACTGiven the ethical controversies concerning HIV vaccine trials , we aimed to understand through an exploratory study how members of institutional review boards in the United States and research ethics committees in South Africa view issues concerning the process and content of reviews of these studies. We mailed packets of 20 questionnaires to 12 US IRB chairs and administrators and seven REC chairs to distribute to their members. We received 113 questionnaires . In both countries, members (...) tended to be white males with advanced academic degrees. Compared to the US, SA members called for ‘major changes’ in HVT protocols more frequently , and were less likely to think that HVT participants understood risks and benefits or informed consent forms . In both countries, members were divided on several critical issues , but agreed that they needed more training. Of the SA respondents, 40% reported that they were ‘self‐taught’ in ethics. This study, the first we know of to offer quantitative data comparing US vs. non‐US IRBs/RECs, thus suggests key similarities and differences , along with needs for education. These initial exploratory data in this area have important implications for IRBs, RECs, policy‐makers and scholars concerning future practice, training, policy, and investigations in research ethics, and prevention and treatment of HIV and other diseases in the developing world and elsewhere. (shrink)
Despite a wealth of prior research, little consensus has arisen about the goals and effectiveness of business ethics education. Additionally, accounting academics have recently been questioned as to their commitment to accounting ethics education. The current study examines whether accounting students' perceptions of business ethics and the goals of accounting ethics education are fundamentally different from the perceptions of accounting faculty members. The study uses a survey instrument to elicit student and faculty responses to various (...) questions concerning the importance of business ethics and accounting ethics education. Statistical analyses indicate that students consider both business ethics and the goals of accounting ethics education to be more important than faculty members. Implications of these results for accounting faculty members interested in accounting ethics education are discussed. (shrink)
The thesis of the paper is that there are no important differences between problems in business ethics and problems in engineering ethics. The problems are both of the same logical type. What keeps this contention from being obvious is that many view engineers as professionals and business persons as nonprofessionals. If you accept the traditional definition of professional neither engineering nor business qualify. If you adopt the attitudinal definition of a profession which I propose, both practitioners could be (...) professionals. This thesis is then tested by applying it to six specific issues in business and/or engineering ethics. (shrink)
This paper seeks to clarify the process of ethical review primarily through a consideration of the lay member's role; it considers some of the conventional accounts of the role and portrays weaknesses in them. Its positive account places the ethical review service in a wide political context allowing the definition of lay member as a politically-positioned individual in the REC with the function of formally representing the public standards of morality in the medical research context.
In the United States, people may donate organs and tissues to a family member, friend, or anyone whose specific need becomes known to them. For example, in late 2003 dozens of people came forward to donate a kidney to a professional basketball player known to them only through his sports performances. People may also donate a kidney to no one in particular through a process known as nondirected donation. In nondirected donation, people donate a kidney to the organ allocation system (...) rather than to anyone known to them personally. There are limits, though, to generosity. People are usually not allowed to donate to groups of people, no matter the contours of the group, whether white, black, Catholic or Presbyterian, third-time liver recipient, and so on. As the agency that oversees national transplantation policy, the United Network for Organs Sharing does not allow this sort of restricted donation, though it appears that some regional Organ Procurement Organizations occasionally bend the rules when donors insist that their organs go to children or to first-time recipients. Those ad hoc arrangements are, however, the exception to the rule. (shrink)
Objective—To demonstrate Japanese doctors' and nurses' attitudes towards and practices of voluntary euthanasia (VE) and to compare their attitudes and practices in this regard. Design—Postal survey, conducted between October and December 1999, using a self-administered questionnaire.Participants—All doctor members and nurse members of the Japanese Association of Palliative Medicine.Main outcome measure—Doctors' and nurses' attitude towards and practices of VE.Results—We received 366 completed questionnaires from 642 doctors surveyed (response rate, 58%) and 145 from 217 nurses surveyed (68%). A total of (...) 54% (95% confidence interval (CI): 49-59) of the responding doctors and 53% (CI: 45-61) of the responding nurses had been asked by patients to hasten death, of whom 5% (CI: 2-8) of the former and none of the latter had taken active steps to bring about death. Although 88% (CI: 83-92) of the doctors and 85% (CI: 77-93) of the nurses answered that a patient's request to hasten death can sometimes be rational, only 33% (CI: 28-38) and 23% (CI: 16-30) respectively regarded VE as ethically right and 22% (CI: 18-36) and 15% (CI: 8-20) respectively would practise VE if it were legal. Logistic regression model analysis showed that the respondents' profession was not a statistically independent factor predicting his or her response to any question regarding attitudes towards VE. Conclusions—A minority of responding doctors and nurses thought VE was ethically or legally acceptable. There seems no significant difference in attitudes towards VE between the doctors and nurses. However, only doctors had practised VE. (shrink)
Given the prevalence of corporate frauds and the significance of whistle blowing as a mechanism to report about the frauds, the present study explores the impact of ethical leadership and leader–member exchange (LMX) on whistle blowing. Additionally, the article also explores the moderating role of the moral intensity [studied as magnitude of consequences (MOC)] of the issue on this relationship. The article reports results of three experimental studies conducted on the postgraduate students of a premier technology institute in India. Ethical (...) leadership, LMX, and moral intensity are manipulated through scenarios. Study one ( n = 81) manipulates ethical leadership (ethical/unethical) and quality of LMX (low and high) as independent variables; study two ( n = 80) manipulates ethical leadership and moral intensity (high and low MOC), and study three ( n = 87) manipulates LMX and MOCs to assess their individual and joint effects on whistle blowing. Results show that not only do ethical leadership and LMX predict whistle blowing, but these relationships get moderated by the moral intensity of the issue as well. (shrink)
In clinical mental health research with children, both child and parent are essential members of the research team. The 3 R's of parent/child team membership are respect, rapport, and recognition. Respect and recognition include fair reimbursement for time, expense, and inconvenience, but the most important compensation for many families is the appreciation of the other team members for their sacrifice and cooperation. Reimbursement, although honoring the principles of justice and respect for persons, raises difficult issues about appropriate amount, (...) particularly in research involving children. The 3 R's are supported by the investigator 5 A's: attitude, adaptability, availability, attachment, and appreciation. Although the principles seem clear in the abstract, implementation encounters many practical problems. Perhaps the most difficult of these is determining the appropriate amount of compensation that avoids undue inducement but not at the expense of the 3 R's and 5 A's. (shrink)
The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.
In their paper “Members First: The Ethics of Donating Organs and Tissues to Groups,” Timothy Murphy and Robert Veatch question the ethical underpinnings of LifeSharers, a grass-roots effort to increase the supply of organs by giving organ donors preferred access to organs.
Background: Due to recent legislations on euthanasia and its current practice in the Netherlands and Belgium, issues of end-of-life medicine have become very vital in many European countries. In 2002, the Ethics Working Group of the German Association for Palliative Medicine has conducted a survey among its physician members in order to evaluate their attitudes towards different end-of-life medical practices, such as euthanasia, physician-assisted suicide, and terminal sedation. Methods: An anonymous questionnaire was sent to the 411 DGP physicians, (...) consisting of 14 multiple choice questions on positions that might be adopted in different hypothetical scenarios on situations of “intolerable suffering” in end-of-life care. For the sake of clarification, several definitions and legal judgements of different terms used in the German debate on premature termination of life were included. For statistical analysis t-tests and Pearson-correlations were used. Results: The response rate was 61%. The proportions of the respondents who were opposed to legalizing different forms of premature termination of life were: 90% opposed to EUT, 75% to PAS, 94% to PAS for psychiatric patients. Terminal sedation was accepted by 94% of the members. The main decisional bases drawn on for the answers were personal ethical values, professional experience with palliative care, knowledge of alternative approaches, knowledge of ethical guidelines and of the national legal frame. Conclusions: In sharp contrast to similar surveys conducted in other countries, only a minority of 9.6% of the DGP physicians supported the legalization of EUT. The misuse of medical knowledge for inhumane killing in the Nazi period did not play a relevant role for the respondents’ negative attitude towards EUT. Palliative care needs to be stronger established and promoted within the German health care system in order to improve the quality of end-of-life situations which subsequently is expected to lead to decreasing requests for EUT by terminally ill patients. (shrink)
Recent law and ethics literature has been inundated with recommendations of the "best interests" criterion as the appropriate guide for neonatal and maternal-fetal decision-making. Increasingly, however, its adequacy is being questioned. In Chapter 1, I survey the arguments of "best interests" defenders and critics and suggest one problem is that the "best interests" criterion has yet to be subjected to a systematic conceptual and ethical analysis. In Chapter 2, therefore, I conduct such an analysis to evaluate more systematically its (...) appropriateness as a decision-making guide in neonatal and maternal-fetal medicine, concluding that the "best interests" criterion cannot assist us in seeing and addressing all that is at stake in neonatal and maternal-fetal decision-making because it excludes any consideration of the "interdependent" and other interests of family members. Therefore, I suggest that an ethical criterion or set of criteria which can explicitly consider and adequately balance the interests of infants or fetuses and family members would be a more helpful guide for neonatal and maternal-fetal decision-making. ;In Chapters 3-7, I attempt to move beyond the "best interests" criterion, drawing on fieldwork I conducted in the United States, Sweden, and India to point out some conceptual and normative gaps to be addressed in the development of a more adequate guide for neonatal and maternal-fetal decision-making. In Chapter 3, I describe this fieldwork and explain its purpose as illustrating the clinical ethical strategies employed in these countries to balance the interests of various parties in actual decision-making. In Chapters 4-6, I describe these strategies. Finally, in Chapter 7, I point out some conceptual and normative gaps in these decision-making strategies, noting that these gaps have also been unaddressed by the "best interests" critics reviewed in Chapters 1 and 2. I suggest that we must address these gaps to develop theoretical structures that will enable us to explicitly consider and adequately balance the "interdependent" and other interests of infants or fetuses, their family members, and even society in neonatal and maternal-fetal decision-making. (shrink)
OBJECTIVES: To identify the factors that influence the assessment of reported cases of physician-assisted death by members of the public prosecution. DESIGN/SETTING: At the beginning of 1996, during verbal interviews, 12 short case-descriptions were presented to a representative group of 47 members of the public prosecution in the Netherlands. RESULTS: Assessment varied considerably between respondents. Some respondents made more "lenient" assessments than others. Characteristics of the respondents, such as function, personal-life philosophy and age, were not related to the (...) assessment. Case characteristics, i.e. the presence of an explicit request, life expectancy and the type of suffering, strongly influenced the assessment. Of these characteristics, the presence or absence of an explicit request was the most important determinant of the decision whether or not to hold an inquest. CONCLUSIONS: Although the presence of an explicit request, life expectancy and the type of suffering each influenced the assessment, each individual assessment was dependent on the assessor. The resulting danger of legal inequality and legal uncertainty, particularly in complicated cases, should be kept to a minimum by the introduction of some form of protocol and consultation in doubtful or boundary cases. The notification procedure already promotes a certain degree of uniformity in the prosecution policy. (shrink)
This book explores a wide range of topics in digital ethics. It features 11 chapters that analyze the opportunities and the ethical challenges posed by digital innovation, delineate new approaches to solve them, and offer concrete guidance to harness the potential for good of digital technologies. The contributors are all members of the Digital Ethics Lab, a research environment that draws on a wide range of academic traditions. The chapters highlight the inherently multidisciplinary nature of the subject, (...) which cannot be separated from the epistemological foundations of the technologies themselves or the political implications of the requisite reforms. Coverage illustrates the importance of expert knowledge in the project of designing new reforms and political systems for the digital age. The contributions also show how this task requires a deep self-understanding of who we are as individuals and as a species. The questions raised here have ancient -- perhaps even timeless -- roots. The phenomena they address may be new. But, the contributors examine the fundamental concepts that undergird them: good and evil, justice and truth. Indeed, every epoch has its great challenges. The role of philosophy must be to redefine the meaning of these concepts in light of the particular challenges it faces. This is true also for the digital age. This book takes an important step towards redefining and re-implementing fundamental ethical concepts to this new era. (shrink)
Since the 1988 Cartwright Inquiry, lay members of ethics committees have been tasked with ensuring that ordinary New Zealanders are not forgotten in ethical deliberations. Unlike Institutional Review Boards in North America, where lay members constitute a fraction of ethics committee membership, 50% of most New Zealand ethics committees are comprised of lay members. Lay roles are usually defined in very broad terms, which can vary considerably from committee to committee. This research queries who (...) lay representatives are, what they do, and what if anything they represent. Our findings are based on data collection with 12 participants: eight semi-structured interviews with lay members from diverse types of ethics committees who described their roles, and commentary from four ethics committee chairs, three of these lay members who commented on this article’s final draft. Findings indicate that the role of New Zealand lay persons – although distinctively valued – is otherwise similar to the documented role of lay persons within North American ethics committees. Lay members see their role as primarily protecting the research participant and at times offering a corrective to non-lay members’ views and the interests of their institutions. However, in spite of their numbers, most lay members do not see themselves as representing any particular constituent groups or institutionally unaffiliated areas of concern. On tertiary education committees especially, there is a good deal of ambiguity in the lay role. (shrink)
Engagement in health research is increasingly practised worldwide. Yet many questions remain under debate in the ethics field about its contribution to health research and these debates have largely not been informed by those who have been engaged in health research. This paper addresses the following key questions: what should the ethical goals of engagement in health research be and how should it be performed? Qualitative data were generated by interviewing 22 people with lived experience, members of the (...) public, and engagement managers about power sharing in health research. Thematic analysis of study data identified the following five themes: the value of engagement in research, ideal engagement, tokenistic engagement, terms to describe those engaged, and engagement roles in research. The paper presents that data and then considers what insights it offers for what engagement should look like—its ethical goals and approach—according to those being engaged. (shrink)
The contribution of healthcare ethics committee (HEC) members to HECs is fundamental. However, little is known about how HEC members view clinical ethics. We report results from a qualitative study of the moral psychology of HEC members. We found that contrary to the existing Kohlberg-based studies, HEC members hold a pragmatic non-expert view of clinical ethics based mainly on respect for persons and a commitment to the patient’s good. In general, HEC members (...) hold deflationary views regarding moral theory. Ethical principles are not abstract foundations but the expression of moral commitments to patients that pre-exist awareness of moral theory. Emotions and proximity to patient sufferance fundamentally shape the views of HEC members on clinical ethics. Further work at the intersection of clinical ethics and qualitative research could bring to the foreground lay perspectives on moral problems that may differ from bioethics expert views. (shrink)
University based academic Research Ethics Boards (REB) face the particularly difficult challenge of trying to achieve representation from a variety of disciplines, methodologies and research interests. Additionally, many are currently facing another decision – whether to have students as REB members or not. At Ryerson University, we are uniquely situated. Without a medical school in which an awareness of the research ethics review process might be grounded, our mainly social science and humanities REB must also educate and (...) foster awareness of the ethics review process throughout the academic community. Our Board has had and continues to have students as active members. While there are challenges to having students as Board members, these are clearly outweighed by the advantages, for both the academic community and the future of ethically sound research in the social sciences and humanities. Moreover, the challenges are often based on misconceptions and can be easily overcome through increased education and understanding of the research ethics review process by the academic community at large. The purpose of this paper is to describe and discuss the experiences, advantages and challenges of having students as REB members. The advantages of having students as REB members include the following: (1) Students are the proposed participants in many of our reviewed protocols and student members may illuminate unique issues of participation. (2) Students are active and highly engaged members of the REB. (3) Having students on the REB enhances awareness of research ethics within the University. (4) Student REB members have an opportunity to mentor other students and provide leadership for both undergraduate and graduate students. (5) Students are more vigorously recruited than faculty members and often apply for student positions with enthusiasm and preparation. (6) In creating an atmosphere of excellence in research, engaging students at the beginning of their research career will help in creating tomorrow’s leaders in research and research ethics. The challenges of having students as REB members include the following: (1) Faculty members may be uneasy regarding the prospect of students reviewing protocols. (2) Faculty members may be concerned about confidentiality and respect with students reviewing faculty research protocols. (3) There may be an increased burden for students who serve as members on an REB. (4) There is concern that students will offer less continuous service to the REB. (5) There is a common misconception that students do not have the experience to carry out ethical reviews. While there are challenges from faculty members and others regarding having students as REB members, these challenges are often based on misconceptions about the nature of the REB work and the ethics review process in general. These challenges are also often based on the misconception of the ethics review process as one of peer review and evaluation, instead of a community-based and inclusive process. Having student members is a long-term strategy for both overcoming the misconceptions of the REB as a “necessary evil” and for fostering an awareness of the imperative for ethically sound research in the social sciences and humanities. (shrink)
Members of the legal, medical and accounting professions are guided in their professional behavior by their respective codes of ethics. These codes of ethics are not static. They are ever evolving, responding to forces that are exogenous and endogenous to the professions. Specifically, changes in the ethical codes are often due to economic and social events, governmental influence, and growth and change within the professions. This paper presents an historical analysis of the major events leading to changes (...) in the legal, medical and accounting codes of ethics. (shrink)
Kant is gaining popularity in business ethics because the categorical imperative rules out actions such as deceptive advertising and exploitative working conditions, both of which treat people merely as means to an end. However, those who apply Kant in this way often hold businesses themselves morally accountable, and this conception of collective responsibility contradicts the kind of moral agency that underlies Kant's ethics. A business has neither inclinations nor the capacity to reason, so it lacks the conditions necessary (...) for constraint by the moral law. Instead, corporate policies ought to be understood as analogous to legal constraints. They may encourage or discourage certain actions, but they cannot determine a person's maxim - which for Kant is the focus of moral judgment. Because there is no collective intention apart from any intentions of the individual agents who act as members of the corporation, an organization itself has no moral obligations. This poses a dilemma: either apply the categorical imperative to the actions of particular businesspeople and surrender the notion of collective responsibility, or apply a different moral theory to the actions of businesses themselves. Given the diffusion of responsibility in a bureaucracy, the explanatory usefulness of collective responsibility may force business ethicists to abandon Kant's moral philosophy. (shrink)
The author's experiences in an ethics seminar for business school faculty are described. Conclusions from the dynamics of the participants' interactions are drawn and recommendations are made for teaching business school students about ethics.
One area of business performance of particular interest to both scholars and practitioners is corporate social responsibility. The notion that organizations should be attentive to the needs of constituents other than shareholders has been investigated and vigorously debated for over two decades. This has provoked an especially rich and diverse literature investigating the relationship between business and society. As a result, researchers have urged the study of the profiles and backgrounds of corporate upper echelons in order to better understand this (...) relationship.There is ample evidence that corporations have in recent years increased the proportion of outside directors on their boards. This has been partly in reaction to increased interest in the corporate social responsiveness of business organizations and suggestions that the board of directors could play a unique role in this area. The expectation on the part of practitioners, researchers, and governmental regulators is that outside directors will advocate greater corporate responsiveness to society''s needs by playing a more active role in overseeing managerial decisions. (shrink)
There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked (...) to a large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential. (shrink)
The publication ‘Governance arrangements for NHS Research Ethics Committees’ is clear in its recommendations about the composition of National Health Service research ethics committees in the United Kingdom. It highlights the need for a sufficiently broad range of experience and expertise, balanced age and gender distribution and every effort to be made to recruit members from black and ethnic minority backgrounds, as well as people with disabilities. It was considered that this composition would make it possible for (...) the scientific, clinical and methodological aspects of a research proposal to be reconciled with the welfare of research participants, and with broader ethical implications. Black and other ethnic minorities constitute 7.9 per cent of the UK population. Ideally, in any research ethics committee with a maximum of 18 members, at least one would be a member of the black or other ethnic minority groups. However, this does not appear to be the case; some committees having more than one, while most do not have any. This paper looks at the present position and suggests ways of improving recruitment and retention of members of these groups. (shrink)
The aim of this research is to investigate students’ and faculty members’ perceptions of the importance of business ethics and accounting ethics education. The study uses a survey instrument to elicit student and faculty responses to various questions concerning the importance of business ethics and accounting ethics education. The sample consists of 75 faculty members and 108 accounting Master students and multiple regression models were used for analyzing and testing hypotheses. The results indicate that (...) there is no significant relationship between dependant variables, the importance of ethics and the importance of goals of ethics education, and independent variables such as responder group, gender, age, and experience. In the other words, independent variables do not create perceptual gap on the importance of ethics and the importance of the goals of ethics education in accounting between faculty members and students. Also, statistical analyses indicate that students and faculty members consider both business ethics and the goals of accounting ethics education. (shrink)
Objectives: There are indications that institutional review board members do not find it easy to assess the risks and benefits in medical experiments, although this is their principal duty. This study examined how IRB members assessed the risk/benefit ratio of a specific phase II breast cancer clinical trial.Participants and methods: The trial was evaluated by means of a questionnaire administered to 43 members of IRBs at six academic hospitals and specialised cancer centres in the Netherlands. The questionnaire (...) addressed: identification and estimation of inconvenience, toxicity, psychosocial distress, and benefits of trial participation to patients; identification and estimation of benefits to future patients and medical science; assessment of the trial’s RBR; and assessment of its ethical acceptability.Results: Most IRB members expected trial participation to involve fairly or very serious inconvenience, fairly severe to sometimes life-threatening toxicity, and serious psychological and social consequences. Conversely, the perceived likelihood of benefits to patients was modest. Most regarded the study as important, and the balance between risks and benefits to be favourable, and believed that the protocol should be approved. The IRB members’ final judgement on the trial’s ethical acceptability was significantly correlated with their RBR assessment of the protocol.Conclusions: Because most patients who participate in clinical trials hope this will prolong their lives, it is suggested that patient information should better describe the anticipated benefits—for example, the likelihood of prolonging life. This would allow patients to make decisions regarding participation based on realistic expectations. (shrink)
This is the first in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. The first considers the rationale for having ethics review by committee at all; seeking to explain why ethics committees, as we currently have them, are so important to the wider system of governing research.
This paper focuses on the REC and its political context to clarify the process of ethical review. The examples initially considered are taken from a Research Ethics Review editorial to develop the social explanation of the membership and function of a research ethics committee. It is suggested that the management and administration of medical matters are not always best understood solely in medical terms. The conclusion of the paper is that the larger political relationships determine the membership and (...) function of the research ethics committee. The REC is defined as the political mechanism for formally socializing medical research and its lay members as similarly socializing the REC. (shrink)
This paper presents an experiential exercise introducing the concept of the personal ethical threshold to help explain why moral behavior does not always follow moral intention. An individual’s PET represents the individual’s vulnerability to situational factors, i.e., how little or much it takes for members of organizations to cross their proverbial line to act in a way they deem unethical. The PET reflects the interplay among the situation, the particular ethical issue, and the individual. Exploring the PET can help (...) account for why some people are sometimes able to withstand substantial organizational pressures to behave in congruence with their ethical intentions, whereas others crumble in the face of apparently minimal situational forces. We hope that students’ exposure to and subsequent reflection upon their PET, by means of the exercise we present, will foster the development of their moral courage. (shrink)
IRBs and REBs use specialized language. A process of definition and re-definition of the situation occurs. That process of interpretation can usefully be considered from the perspective of interpretive social science models involving Symbolic Interaction, Semiotics and Hermeneutics. Seven examples are provided to flesh out the nuances of contextual decision making and the “casuistic” aspects of a balanced approach to complex problems. While many decisions are relatively unproblematic and can follow a template, it is not possible simply to apply a (...) fixed and mechanical approach. Hence, a socialization process occurs in which committee members must learn the actual application of the rules as opposed to the formal requirements. A “tightrope” between overly rigid and overly lax interpretations must be crossed and the more we understand the process of semiosis and the semiotic context the more likely it will be that truly ethical decisions will be “accomplished.” The lack of adequate survey data makes it all the more important to have good theoretical understanding of process. (shrink)
This is the third in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in balancing the social value of the research it reviews against the risks it imposes on those who take part. The ethics committee's role in assessing the (...) social value of research goes well beyond checking its scientific validity and this assessment may affect the risks ethics committees are prepared to ask of subjects not only for their own potential personal interests but importantly and inevitably in the name of science. However, their function is importantly restricted by the wider regulatory and governance environment in which they work. (shrink)
What is the value of an early diagnosis of dementia in the absence of effective treatment? There has been a lively scholarly debate over this question, but until now patients have not played a large role in it. Our study supplements biomedical research into innovative diagnostics with an exlporation of its meanings and values according to patients. Based on seven focusgroups with patients and their care-givers, we conclude that stakeholders evaluate early diagnostics with respect to whether and how they expect (...) it to empower their capacity to care. They value it, for instance, with respect to whether it explains experienced complaints, allows to start a process of psychological acceptance and social adaptation to the expected degeneration, contributes to dealing with anxieties, informs adequately about when to start preparing for the end of life, informs the planning of a request for euthanasia, or allows society to deal with a growing amount of dementia patients. Our study suggests that information about disease is considered ‘harmful’ or ‘premature’ when recipients feel unable to act on that information in their care. The results of this research offers input to further ethical research. It invites to adopt a care perspective in evaluation and to seek ways to prevent the ‘harm’ that such diagnostic methods can bring about. (shrink)
In countries outside the developed world, although writers have written commentaries on specific legal codes, very little attention has been given to legal writing which has focused specifically on the ethics of the legal profession. This book makes a special contribution in that regard providing, as it does, a comparative study of prevailing efforts to enhance ethical standards in a profession potentially in crisis and under much public scrutiny. Countries which have been examined include the UK, the US, Canada, (...) South Africa, and countries in the Pacific, South East Asia and the Caribbean. Valuable guidance and learning are provided on such topical issues as wasted costs orders, conflicts of interests, legal and judicial codes, confidentiality, privilege and the ethics of the criminal process, where the jury system comes in for critical evaluation. This book will be a valuable text on the ethics and status of the profession. It will be of considerable interest to law students, practitioners and legal academics, Bar Associations, Attorneys-General and Directors of Public Prosecutions as well as members of the judiciary. (shrink)