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)

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.

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)

Most hospitals and nursing homes have individuals who engage in ethics consultation, and most do so with very little, if any, training. The goal of this article is not to advance the scholarly literature on training clinical ethics consultants, but instead to provide a road map for individuals doing ethics consultation who would like more training. In this way, I hope to advance the field in some small way, by educating, empowering, and encouraging small- to medium-sized hospitals (...) to train the members of their ethics committee who engage in ethics consultation. (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)

The Association of Research Ethics Committees is one of the leading providers of training and education for members of Research Ethics Committees. The introduction of the research governance strategy and the increasing complexity of ethical review place great demands on research ethics committee members that in turn creates challenges for training providers. This paper presents the outcome of an audit of REC members' views about training. Findings demonstrate that REC members are not a (...) homogenous group. Several distinct sub-groups, each with particular training needs emerged. All showed a preference for short, easily accessible events in which there were opportunities for discussion. (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)

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: 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 (DGP) has conducted a survey among its physician members in order to evaluate their attitudes towards different end-of-life medical practices, such as euthanasia (EUT), physician-assisted suicide (PAS), and terminal sedation (TS). 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% (n=251). 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)

Ethics commissions provide expert advice to governments on what policies to implement regarding pressing ethical issues, most often in bioethics. These commissions distinguish themselves by having members from the professions we are most likely to think of as moral experts, if we believe that these exist. The relationship between moral experts and the composition of ethics commissions is worthy of further exploration, especially because of the highly controversial nature of whether moral expertise exists and, if so, how, (...) and whether, we can identify moral experts. Moreover, it has been argued that the emergence of ethics commissions and how they have been composed have led to a “thinner” debate. In the first part of the article, the problem regarding checks for identifying moral experts is discussed. I argue that one way to handle this difficulty is through the application of Rawls’ concept of comprehensive doctrines. These doctrines have inherent standards that function similarly to independent checks, making it possible to identify moral experts from within such different doctrines. Using this approach makes it manageable to appoint moral experts to ethics commissions. In the second part, I consider the implications of seeing moral expertise through the prism of comprehensive doctrines for the composition of ethics commissions. One natural conclusion is that we should select moral experts representing different reasonable comprehensive doctrines to serve as members of ethics commissions. I consider six challenges to my proposal and demonstrate why these lack merit, and I point out some practical concerns that need further inquiry. (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)

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)

This paper presents an experiential exercise introducing the concept of the personal ethical threshold (PET) 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)

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)

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)

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)

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)

The role of the Research Ethics Committee (REC) in the design, conduct and dissemination of scientific research is still evolving and many important questions remain unanswered. Hence, the aim of this paper is to address some of the uncertainty that exists around the role and responsibilities of RECs and to discuss some of the controversy that exists over the criteria that RECs should follow when evaluating a research proposal. The discussion is organised around five of the major roles currently (...) performed by RECs when assessing proposals in the biomedical sciences. It will be shown that these five roles need to be critically evaluated and reassessed. The five roles addressed are: assessing the legitimacy and validity of the informed consent process, second, conducting a comprehensive risk/benefit analysis, third, assessing the validity of a research proposal, fourth, ensuring that researchers observe the social norms, values, customs, traditions and laws that prevail in the community or jurisdiction in which the research will be conducted and finally, monitoring the research project as it unfolds and providing an ongoing advisory and consultancy service to both new and experienced researchers. In reassessing the role of the REC, this paper concludes with a set of general recommendations for RECs. These provide some guidance on the minimum criteria that should be followed when RECs evaluate proposals. These guidelines will be beneficial for new and experienced members of REC, and will help to make the process a more objective, efficient and standardised process. The guidelines will also be beneficial for researchers in the biomedical sciences who are preparing proposals for ethical review. (shrink)

1. Each NABC member institutions should ensure that subject matter on ethical issues associated with food and agricultural biotechnology is systematically integrated into the curriculum of their institution. The pattern of implementation will vary a teach institution, but we expect that some combination of the following three strategies will be employed at most institutions. a) Modules Included in Basic and Applied Science Courses b) Modules Included in General Courses on Applied Ethics c) Special courses on Ethics and Food (...) Biotechnology 2. Each NABC member institution should develop an institutional mechanism for supporting faculty interest and research on ethical issues. Again, implementation will vary. In some institutions, an informal network of interested colleagues will fulfill this function, but in many places an annual workshop or a formal faculty/center will be needed to carry this out. (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.

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)

Background Genetic research can yield information that is unrelated to the study’s objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent. Methods We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual (...) genetic research findings in African genomics research. Results A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research. Discussion Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination. (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)

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)

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)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

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.

This study investigated effects of codes of ethics on perceptions of ethical behavior. Respondents from companies with codes of ethics (n = 465) rated role set members (top management, supervisors, peers, subordinates, self) as more ethical and felt more encouraged and supported for ethical behavior than respondents from companies without codes (n = 301). Key aspects of the organizational climate, such as supportiveness for ethical behavior, freedom to act ethically, and satisfaction with the outcome of ethical problems (...) were impacted by the presence of an ethics code. The mere presence of a code of ethics appears to have a positive impact on perceptions of ethical behavior in organizations, even when respondents cannot recall specific content of the code. (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)

This study empirically examined the views of Certified Internal Auditors (CIAs) concerning the role of Code of Ethics for members of the Institute of Internal Auditors. It is a continuation of an earlier study which examined the usefulness of the Code to CIAs. Among the questions asked were what is the primary reason for the Code of Ethics, how useful is it, have you used it, should more enforcement actions be taken against members who violate the (...) Code, and what are the legal and moral responsibilities of the CIA to report serious ethical violations, e.g., environmental pollution, to outsiders when top management and the board of directors are aware of the matter but are not doing anything to correct it. The results indicate strong support for the Code, its enforcement, and use as an instrument to encourage the internal flow of ethical behavior by embers and others. (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.

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)

In spite of strengthened financial regulation, ethical concern continues about the promotion and distribution of financial services in Britain, including savings and investment products. Greater ethical attention needs to be paid to products, price, promotion and distribution. The authors are all faculty members of the School of Management and Finance, University of Nottingham, University Park, Nottingham NG7 2RD, UK. Correspondence should be addressed to Dr Ennew. Alison McGregor gratefully acknowledges funding provided by the Association of British Insurers.

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)

This case explores the ethical landscape around recontacting a subject's relatives to return genetic research results when the informed consent form signed by the original cohort of subjects is silent on whether investigators may share new information with the research subject's family. As a result of rapid advances in genetic technology, methods to identify genetic markers can mature during the life course of a study. In this case, the investigators identified the genetic mutation responsible for the disorder after a number (...) of their original subjects had died. The researchers now have the ability to inform relatives of the subject about their risk of developing the same disease. Mark Rothstein, JD, from the University of Louisville School of Medicine, provides an overview of the medical/scientific, legal, and ethical issues underlying this case. Lauren Milner, PhD, and colleagues at Stanford University explore how the relationship between researcher and subject affect this debate. Seema Shah, JD, and colleagues at the National Institutes of Health and University of California, Los Angeles discuss whether and how requirements of the duty to warn are applicable in this case. (shrink)

In recent years, a new generation of activists has reinvigorated debate over the public commemorative landscape. While this debate is in no way limited to statues, it frequently crystallizes around public representations of historical figures who expressed support for the oppression of certain groups or contributed to their past or present oppression. In this paper, I consider what should be done about such representations. A number of philosophers have articulated arguments for modifying or removing public monuments. Joanna Burch-Brown (2017) grounds (...) her argument for removal in what I call the “honorific” function of such representations—the ways in which they express and tend to cultivate admiration for their subjects. In the first two sections of the paper, I develop a novel argument for modifying these representations based on this insight. I argue that leaving such representations unmodified in the public space tends to undermine the dignity of members of oppressed groups as well as their assurance that society and government are committed to their rights and constitutional entitlements. In the paper’s third section, I develop a “balancing test” for determining whether the relevant moral and pragmatic considerations favor making a particular representation inaccessible to the public, or recontextualizing it for public consumption. Unlike some of the existing philosophical treatments of honorific representations that focus on particular monuments, this balancing test is designed for general application to any honorific representation that satisfies the presumptive case for modification. To conclude, I offer some reasons why weak forms of recontextualization that do not involve altering institutional context may often be an insufficient remedy for the problems I describe. (shrink)

Background: The acquisition of experience is a major concern for nurses in intensive care units. Although the emotional component of the clinical practice of these nurses has been widely studied, greater examination is required to determine how this component influences their learning and practical experience. Objective: To discover the relationships between emotion, memory and learning and the impacts on nursing clinical practice. Research design: This is a qualitative phenomenological study. The data were collected from open, in-depth interviews. A total of (...) 22 intensive care unit nurses participated in this research between January 2012 and December 2014. Ethical considerations: The School of Nursing Ethics Committee approved the study, which complied with ethical principles and required informed consent. Findings: We found a clear relationship between emotion, memory and the acquisition of experience. This relationship grouped three dimensions: (1) satisfaction, to relieve the patient’s pain or discomfort, give confidence and a sense of security to the patient, enable the presence of family members into the intensive care unit and provide family members with a realistic view of the patient’s situation; (2) error experience, which nurses feel when a patient dies, when they fail to accompany a patient in his or her decision to abandon the struggle to live or when they fail to lend support to the patient’s family; and (3) the feel bad–feel good paradox, which occurs when a mistake in the patient’s care or handling of his or her family is repaired. Conclusion: Emotion is a capacity that impacts on nurses’ experience and influences improvements in clinical practice. Recalling stories of satisfaction helps to reinforce good practice, while recalling stories of errors helps to identify difficulties in the profession and recognise new forms of action. The articulation of emotional competencies may support the development of nursing ethics in the intensive care unit to protect and defend their patients and improve their relationships with families in order to maximise the potential for patient care. (shrink)