Editorial – ethical practice and genomic research

Ethical tensions are part of the everyday practice of doing research—all kinds of research. How do researchers deal with ethical problems that arise in the practice of their research, and are there conceptual frameworks that they can draw on to assist them? This article examines the relationship between reflexivity and research ethics. It focuses on what constitutes ethical research practice in qualitative research and how researchers achieve ethical research practice. As a framework for thinking through these issues, the authors distinguish two different dimensions of ethics in research, which they term procedural ethics and “ethics in practice.” The relationship between them and the impact that each has on the actual doing of research are examined. The article then draws on the notion of reflexivity as a helpful way of understanding both the nature of ethics in qualitative research and how ethical practice in research can be achieved.

The ethics review of qualitative health research poses various challenges that are due to a mismatch between the current practice of ethics review and the nature of qualitative methodology. The process of obtaining ethics approval for a study by a research ethics committee before the start of a research study has been described as “procedural ethics” and the identification and handling of ethical issues by researchers during the research process as “ethics in practice.” While some authors dispute and other authors defend the use of procedural ethics in relation to qualitative health research, there is general agreement that it needs to be supplemented with ethics in practice. This article aims to provide an illustration of research ethics in practice by reflecting on the ways in which we identified and addressed ethical and methodological issues that arose in the context of an interview study with mental health service users and relatives. We describe the challenges we faced and the solutions we found in relation to the potential vulnerability of research participants, the voluntariness of consent, the increase of participant access and the heterogeneity of the sample, the protection of privacy and internal confidentiality, and the consideration of personal and contextual factors.

Practitioners have frequent contact with populations underrepresented in scientific research--ethnic/racial groups, sexual minorities and others at risk for poor health and whose low participation in research does not reflect their representation in the general population. Practitioners aspire to partner with researchers to conduct research that benefits underrepresented groups. However, practitioners are often overlooked as a work force that can help erase inclusion disparities. We recruited (n = 282) practitioners (e.g. physicians, social workers, health educators) to examine associations between their attitudes toward research purposes, risks, benefits and confidentiality and their involvement in recruitment, interviewing and intervention facilitation. Participants worked in community-based agencies in Madrid and New York City (NYC), two large and densely populated cities. We used cross-sectional data and two-sample tests to compare attitudes toward research and practitioner involvement in recruiting, interviewing and facilitating interventions. We fit logistic regression models to assess associations between practitioner attitudes toward ethical practices and recruitment, interviewing and facilitating interventions. The likelihood of recruiting, interviewing and facilitating was more pronounced among practitioners agreeing more strongly with ethical research practices. Though Madrid practitioners reported stronger agreement with ethical research practices, NYC practitioners were more involved in recruiting, interviewing and facilitating interventions. Practitioners can be trained to improve attitudes toward ethical practices and increase inclusion of underrepresented populations in research. Funders and researchers are encouraged to offer opportunities for practitioner involvement by supporting research infrastructure development in local agencies. Practices that promise to facilitate inclusion herein may be used in other countries.

Research on health and disasters within the social sciences and public health is produced from a wide range of methodological and disciplinary perspectives. Major disaster events continue to highlight the need for health and disaster researchers to further reflect on the procedural and practical aspects of research ethics. We conduct a scoping review and qualitative frame analysis of 76 empirical articles from 2000 onwards, with the aim of uncovering the dominant framings of ‘ethical practice’ within health and disaster literature. The review demonstrates that the literature presents competing framings of risk – namely, a more individualist and biomedical understanding of trauma, and a focus on community-level and contextual aspects of risk, respectively. These competing frames of risk determine how different parts of the field negotiate ethical processes and practices. Additional points of tension are found in the way in which disaster-affected people and places are characterised as (or as not) particularly vulnerable, and the role of formal ethical review committees. This review synthesises proposed solutions from literature to improve both procedural and practical ethics and finds there are continued disagreements surrounding even the most frequently called-for changes. The contrasting framings of ethics problems and solutions within this field indicate the need for consensus around the practical ethics of health and disaster research. Further reflection is warranted for more coherent engagement between this research field and disaster-affected communities.

Q Maintaining my moral integrity is important to me, yet I have been faced with situations that challenge my ethical compass. How do I develop the internal strength to remain true to my values? How can my organization support efforts by my coworkers and me to speak up when we feel there are ethical concerns? What can I do as an individual and what can my organization do to enhance the environment to ensure ethical practice?A Karen Stutzer, rn, phd, and Mary Bylone, rn, msm, cnml, reply:It is well documented and acknowledged that the critical care environment contains daily challenges to individual nurses in regard to their moral integrity.1–3 Andrew Jameton4 initially described moral distress as when "one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action."4(p6) Identifying moral distress was the beginning of decades of work that has described and measured the impact of moral distress across multiple nursing specialties.1 The debilitating impact of moral distress on nurses is supported by research and includes burnout, disengagement from patients and families, stress-related illnesses, turnover, and leaving the profession.1A promising approach to addressing situations that challenge one's ethical compass and the resulting moral distress is to incorporate strategies that promote moral resilience into organizational and individual practices. Moral resilience has been described as "the capacity of an individual to sustain or restore integrity in response to moral complexity, confusion, distress or setbacks."5(pS13) Developing personal strategies to strengthen one's approach to ethically distressing situations and seeking organizational strategies to support ethical practice are 2 ways to build moral resilience capacity.At the National Teaching Institute held in May 2017, a panel led several hundred acute and critical care nurses in a discussion about moral distress. Participants were encouraged to "forge a new path"6 and consider strategies to shift the dialogue and experience to those that promote resilience. This column is a reflection of the thinking of these participant experts—acute and critical care nurses who navigate the health care system to advocate for patients and families daily (Tables 1 and 2).Care for the critically ill patients occurs within health care organizations, and the ethical climate of those environments directly affects the ability of the nurse and members of the interprofessional team to provide care ethically.8 Health care organizations can and should provide systemic support to ensure the environment is conducive to ethical practice. The American Nurses Association Code of Ethics requires nursing leaders, in collaboration with nursing care providers, to ensure the practice environment supports the moral integrity of nurses.9,10Policies that support ethical practice are key to creating organizational infrastructure that can mitigate morally distressing events. Nursing leadership and bedside care providers need to identify the policies that are most supportive of ethical practice and develop those policies collaboratively. Among the areas that might be covered are mechanisms for addressing ethical concerns, protection of moral integrity, and organizational priorities for ethical practice. More specific examples include informed consent, withholding and withdrawal of life-sustaining therapies, health care decision-making, and calling an ethics consultation.11Nursing leaders are positioned to influence ethical practice through their words and deeds. Through support of shared governance structures, nurses are able to ensure their voice is included in policy development. It is key that policies and practice reinforce the expectation that nurses will verbalize concerns.12Organizations must provide adequate financial and human resources to support an ethical culture. The presence of effective ethics committees and qualified ethics consultants provides organizational structure for ethical practice.8 There should also be support for nurses who provide care to patients to be part of these committees. Organizations should provide processes, structures, and well-prepared educators to ensure ongoing education to develop and sustain ethical competence. Inquiring daily about potential ethical concerns in concert with the presence of well-prepared ethics resources can provide opportunity for early intervention and perhaps diminish the degree of distress experienced by all members of the team.13The emergence of moral resilience as a strategy to manage and cope with moral distress is a relatively new discussion. As one thinks about personal actions, it is an important step to recognize one's intrinsic ability to care for oneself, advocate for patients, and work with organizational leadership to address ethically distressing situations. The professional Code of Ethics supports the requirement that nurses must promote personal health and well-being, and advocate for patients and ethical work environments.9Moral resilience comes from a place of intentional actions to build on personal strengths. Knowing one's personal values and being willing to take courageous action move the experience from one of distress to one of resilience.5 The ability to stay true to oneself, make decisions that are consistent with one's beliefs, and persevere in addressing concerns are attributes of moral resilience12 and behaviors one can develop and nurture. Additionally, nurses must be willing to support others in these situations, even when the issue is not a problem for themselves. Knowing your colleagues are supportive of what is important to you provides strength for speaking up, which, in turn, improves the dialogue.Maintaining balance and harmony in one's life needs to be a priority. A healthy diet, proper rest, and time for relaxation can foster the needed energy to cope with distressing situations. Mindfulness practices, exercise, yoga, or other activities that encourage respite from stress can also enhance resilience.Membership in professional organizations should be considered a strategy to promoting moral resilience. Nursing organizations provide a collective voice for nursing concerns and issues, and provide opportunities for networking and supportive dialogue with colleagues. The American Nurses Association has convened a professional issues panel that examines moral resilience with the intention of identifying strategies to strengthen the ethical voice of nurses and, thereby, promote moral resilience.14 In addition to the development and publication of the Healthy Work Environment Standards,7 the American Association of Critical-Care Nurses is an active participant in collaborating with a variety of nursing organizations to promote moral resilience.3 More work is needed to make these documents part of every workplace.Moral resilience moves the internal dialogue from one of disappointment and powerlessness to one of strength and empowerment. Consciously acting to develop moral resilience enhances one's self-confidence in managing ethically difficult situations.12 Through an ongoing commitment to developing self-awareness and insight when faced with ethical challenges, one can gain a deeper sense of understanding and sense of mastery when faced with ethically distressing situations.5

Research is one of the tri-focal functions of a university. The educational institution is the first home and ‘engine’ of scientific studies. Educational institutions infinitely embrace research as humans continuously thirst for knowledge to improve our quality of life. Thus, ethical research practice has always been an issue and matter of academic concern in schools. This article aims to review evidence of ethical research practices in educational institutions. The references and sources of this literature review came from known research databases such as Google Scholar, Open Access Directory Journals, and prominent University Websites with specific sections on Research and Ethics. Furthermore, this provides a better understanding and a general picture of research ethical practices in schools that led to the development of a conceptual framework that illustrates the supposed-to-be ethical research practices and standards for schools that lead to the crafting of quality studies that are worth publishing and disseminating. Research ethical considerations and principles guide research designs and implementations. These include the universal standard and norm of ensuring the voluntary participation of and obtaining informed consent from research participants (Bhandari, 2022; Felzmann, 2009; & Resnik, 2020). Furthermore, this review also led to the researchers’ assumption that research ethical practices and principles are associated with the level of personal ethics and moral values of a researcher and that there is a difference in the degree of practice and consideration of research ethics with respect to the nature, purpose, and design of research. Lastly, this article illustrated in its framework that the assumptions and the primary principles of research ethics (Resnik, 2020; & Smith, 2003) are inputs to ethical considerations in research. Hence, these concepts strongly underpin the significant roles of the technical review boards (TRBs) and the research ethics committees (RECs) in educational institutions to ensure that academic and scientific research done in the school setting is of quality and with academic integrity, credibility, trustworthiness, and rigor (Bhandari, 2022).

Sexual and reproductive health issues remain a huge public health challenge, especially in developing countries. These problems arise acutely in socio-cultural contexts marked by social prohibitions relating to adolescent sexuality. However, it is important to listen to adolescents to better understand how they experience their sexuality, the issues associated with it and their needs and expectations. For this, researchers must, among other things, appropriate the frame of reference of adolescents in terms of sexuality to promote relevant policies and interventions. But how can researchers conduct ethical research with people who are under parental care and socially condemned in relation to the research object? This article aims to contribute to the reflection on ethical research practices in sexual and reproductive health with African adolescents. In this paper, I have considered some ethical challenges and the prospects for solving them.

Conventional medical training offers little help to students to resolve the ethical dilemmas they face as healthcare professionals. Public awareness of the ethical behavior of medical practitioners has been growing. Aim of this study was to assess knowledge of, practice in and attitudes of healthcare ethics among medical, dental and physiotherapy postgraduate students. A cross-sectional analysis based on a questionnaire was performed at a hospital and dental institution of the medical college. The present study included 60 postgraduate students. The questionnaire on health care ethics is a 44-point self-administered standardized questionnaire that poses ethical dilemmas in 5 vignettes with closed-ended questions to test awareness, attitude and experience in the area of healthcare ethics. In the first half of the questionnaire, knowledge and attitude were assessed using 5 case scenarios representing ethical dilemmas and the participants answered the questions using the 5 point likert scale. The second half assessed the practice of Ethics in research and clinical practice. The expected time to fill each questionnaire was about 10–15 min. 62 questionnaires were distributed. 60 completed questionnaires were returned. The response rate was 96%. The mean age of the postgraduates was 26.23 ± 2.33. Among the participants 28 (46%) were male and 32 (53%) female. 20 completed questionnaires from each, medical, dental and physiotherapy postgraduate students were collected. The multiple group comparison showed that the difference in the knowledge scores were statistically significant between dental (D) and physiotherapy (P) (0.015) and between medical (M) and physiotherapy (0.018) but no significant difference between medical and dental (0.927). Study suggests that abstract knowledge cannot be converted into practical knowledge automatically. There is a major lack of knowledge of the ethics of health care among graduate students. The postgraduate curriculum must include a good mix of both theoretical concepts and practical application of multidisciplinary healthcare ethics ethical principles and guidelines.

Challenges of applying universal ethics principles in research practice are widely discussed among educational researchers. Scholars have suggested different approaches to improve research practices, including acknowledging cultural relativism and practicing situated ethics. This article argues that more meaningful research processes and outcomes may be achieved by responding to three similar, yet potentially different “sets” of ethical principles: a) institutions’ (universal) research ethics; b) participants’ ethics and; c) researchers’ personal ethics. We discuss and present our exploration of these three aspects through an approach which enables more flexibility for education researchers in practice. Responsive Ethics embraces the interplay of these three aspects. We suggest that the “research ethics space” generated from response to and negotiation among these three aspects has potential for more meaningful and transparent education research outcomes. By establishing a comfortable middle ground between sometimes extreme positions of the ethical principles of the participants, researcher, and the institution (universal research ethics), Responsive Ethics contributes to discussions on improving ethical research practices in education contexts.

Theoretically, community participation decolonises research ethics in settings where a ‘coloniality of power’ persists. We used ethnographic methods to document our experiences of ‘ethics in practice’, and interrogate the (de)colonising outcomes, of community participation in voluntary informed assent and consent (VIAC) procedures with 16–17-year-old Black South African youth and parents. Community participation decolonised by: (1) disrupting and problematising the power dynamics of written VIAC procedures and (2) minimally shifting power to youth and parents. However, community participation sometimes reinforced existing power hierarchies. In postcolonial qualitative research settings, community participation has potential to, but will not necessarily, decolonise ethics in practice.

How decisions are made and communication is handled are essential to ensuring a good outcome.In the case of Scardoni v Hawryluck,1 Mrs H was an 81-year-old woman with advanced Alzheimer disease, cardiovascular illness, and septic shock whose family and physician could not agree on goals for care, requiring that a legal decision be made regarding the level of care to be provided. Over time and after much discussion, the multidisciplinary team on the intensive care unit (ICU) reached a consensus that intensive care for Mrs H would not improve her condition. So it was decided that after Mrs H was stepped down to a general medical unit, should an infection or respiratory distress develop, she would not be returned to the ICU. The attending ICU physician informed the family that instead of ICU care, “the hospital would offer her palliative care: painkillers and sedatives to keep her comfortable while her afflictions took their course.”2 In this particular case, the patient’s family challenged the health care team’s recommendations and insisted that their mother be readmitted to the ICU so that aggressive life-sustaining treatment would continue.This case, although Canadian, is relevant to ICU settings throughout North America. The purpose of this discussion is not to provide an in-depth ethical analysis, but rather to use the case of Mrs H to characterize one type of health care situation that clinical ethicists could help facilitate. Medical recommendations such as those involved in the care of Mrs H are made to prevent the “revolving door” patient, who according to ICU teams will receive no medical benefit if returned to the ICU. Decisions not to readmit are euphemistically referred to by some ICU staff as the “one-way ticket out of ICU” or “celestial transfer.” Such language shared between colleagues reflects a coping strategy, a “gallows humor,” intended to manage difficult feelings like sadness, anger, grief, sympathy, or moral distress. Cases like that of Mrs H are of particular concern to critical care nursing. Research has indicated that moral distress, a significant contributing factor to burnout, is encountered by ICU nurses when the care they are providing to a patient is regarded as futile.3It is not uncommon for hospital-based clinical ethicists to receive a request for consultation when disputes regarding similar recommendations for care arise between substitute decision makers and the ICU treatment team. These cases can lead to moral distress because of commonly held opinions among team members that futile treatment is being provided. Although staff can provide many life-sustaining treatments to such a patient, ethical questions often arise during the patient’s stay in the ICU. What ought to happen when an ICU team decides that a patient should be transferred to a general medical unit to receive comfort measures only, with no readmission to the ICU? Although teams discuss the practical questions about what can be done, the ethical questions about what ought to be done are sometimes not as clear. The following discussion explores how clinical ethicists can provide valuable assistance with the kinds of ethical challenges these situations customarily present. Particular emphasis will be placed on working within a process-driven, interdisciplinary framework that maintains a communication-oriented approach to ethical decision making.Clinical ethics is a relatively new field, and the role and purpose of clinical ethicists can vary somewhat according to the particular health care setting. For the purpose of this discussion, the authors describe the knowledge, skills, and activities of clinical ethicists through their review of relevant literature as well as their own training and experiences as staff clinical ethicists at 2 acute care settings in Ontario, Canada.Greater legal clarity or legislative measures to specifically address conflicts that arise over withdrawal or withholding of treatment for terminally ill patients are required, according to at least one legal expert. Current Canadian law, according to this same scholar, leaves doctors, patients and their families in a “grey zone” as to who should have ultimate authority on such decisions.4 The daily reality in most North American ICUs is that this gray zone persists—for better or worse. Although hospitals attempt to provide guidelines for addressing conflicts such as the one involving Mrs H, it is the quality of communication and relationship within the interdisciplinary team and between the treating team and the patient’s family that has a marked influence on decision making.5–7 In most cases similar to this one, consensus about level of care is first achieved by the interdisciplinary team, and a subsequent agreement is reached between the treatment team and the patient’s substitute decision maker and family. However, when agreement cannot be reached because of irreconcilable notions pertaining to what constitutes benefit to the patient and what constitutes harm, the results can be uncertain, stressful, and most unsatisfactory for both the health professionals involved and the patient’s family. This combination of an unfortunate turn of events for the patient, sharing of bad news with family members, and the recommendation for care outside of the ICU is a juncture of decision making at which conflict can occur and ethical challenges are most apparent to members of the interdisciplinary team.8,9Much has been written about the difficulties in communication within the ICU and how this affects patient care. Considerable evidence indicates that communication between the ICU team, patients, and patients’ families can be inadequate, leading to conflict and a possible long-term effect on the patient’s family.6,8,10,11 In one study,8 46% of families who had a loved one die in the ICU reported conflict over decisions to withdraw or withhold life-support measures. These family members also reported conflict over the manner in which staff communicated with or behaved toward them. The authors of that study8 cited family members who felt pressured by staff to “hasten their loved one’s death because they placed a burden on valued resources.” The importance of communication between treatment teams and patients and patients’ families cannot be overstated. In addressing the difficulties and deficiencies that have been identified, 2 experts concluded, “communication with caregivers is consistently identified as the most important and least achieved factor in patient/family satisfaction surveys.”12Intensive care is primarily intended to provide maximum benefit to those patients who are likely to recover from their infirmity or trauma.13 When the interdisciplinary team is not clearly communicating ethical considerations as well as the criteria they are using to determine the effectiveness or success of the treatment plan, patients’ families may develop erroneous expectations that life-sustaining interventions will continue to be offered.6 At the same time as a loved one is receiving ICU care with a grim prognosis, families are struggling to come to terms with impending loss. Family functioning or experience in coping with loss,14 unrealistic expectations regarding health outcome, within a societal context of diverse religious or cultural beliefs, can markedly influence families’ decision making about end-of-life care. Such formidable contributing factors further emphasize that effective communication strategies, as well as an appropriate level of sensitivity, ought to be used in ICUs when dealing with patients’ families.11Team communication, in particular communication between disciplines, also has proven problematic in decisions about end-of-life care in the ICU. Critical care nurses have cited difficulties in communication and decision making within interdisciplinary ICU teams. Ferrand et al15 reported that 75% of the nursing staff who participated believed that “collaboration was inadequate during decision making” despite general agreement that such team collaboration is necessary and desired. In another study,16 about one-third of the ICU nurses who participated felt “excluded by physicians from patient care decisions and felt their exclusion to be a detriment to patient care.”In terms of the burdens carried in making decisions about end-of-life care, some evidence suggests that physicians and nurses experience equal burdens. Physicians experience the burdens associated with having to make these decisions, and nurses feel the burden of having to carry out care decisions made by someone else.17 Given the shared burdens that members of the interdisciplinary team face, as well as the reported difficulties in end-of-life care decision making in the ICU, ensuring effective communication is a key feature of high-quality patient care.7 The following discussion is intended to demonstrate how clinical ethicists can be supportive of such strategies for effective communication and decision making.Medical recommendations like those pertaining to the care of patients such as Mrs H are based on best-practice standards of care and are informed by ethical principles like beneficence, nonmaleficence, and autonomy. Continued life-sustaining support in situations where benefit is in question can be regarded as futile, a concept with inherent ethical challenges. As Weijer et al18 point out, the values inherent in medical futility arguments often confuse treatment considered ineffective and treatment that will be effective but will ultimately result in a controversial outcome such as permanent unconsciousness. A team’s decision to not readmit a patient for ICU care can be an attempt to address futility based on controversial outcomes that the team may perceive as causing more harm for the patient than good. Poignantly stated, “if the welfare of the patient is the whole purpose of providing treatment and if that treatment brings needless suffering, then the whole purpose of medicine is defeated.”19 Although the concept of futility in ICU care is a subject worthy of ethical debate, it will not be the focus of this discussion. Rather, the subject of this discussion is the role of clinical ethicists in helping decision makers address ethical considerations such as futility.The results of inadequate communication, misunderstandings, or disagreements arising from divergent views about what is beneficent and the institutional realities surrounding resource allocation can be seen in the moral distress and subsequent moral residue experienced by both the patient’s family members and the health care staff involved. Moral distress occurs when a person can identify the ethically appropriate course of action, but does not feel able to carry this action forward because of barriers that may include lack of resources, legal limits, institutional obstacles, or imbalances in power, for example. Effects of moral distress on an individual can include feelings of anger, frustration, anxiety, or depression.20 Moral residue can be encountered when “deeply held beliefs, values and principles” are set aside at the expense of one’s personal sense of integrity.21 For families of patients, moral residue can manifest in lifelong memories about difficult health care experiences.The experience of moral distress and moral residue are of particular importance to critical care nursing. Some evidence indicates a relationship between an ICU care nurse’s perception of providing futile care, inadequate communication about the care plan within the interdisciplinary team, and the incidence of moral distress, emotional exhaustion, and burnout.3,16,22 Cases like that of Mrs H can present these kinds of challenges to nurses providing care at the bedside. The discussion also highlights how clinical ethicists can assist interdisciplinary teams in addressing ethical challenges that can lead to moral distress.Finally, the ethical climate within our health care settings is shaped by the organizational values inherent in hospital policies, approaches to handling conflict, allocation of human and material resources, the daily-lived experience of staff providing care, and those to whom care is provided.23,24 Economic constraints, resource allocation difficulties, and staffing shortages contribute to the moral climate of health settings, the moral distress of staff, and burnout among health care providers.25,26In cases such as that of Mrs H, the ethical challenges are not just about treatment requests considered inadvisable but also about scarce resources like ventilator-equipped beds in ICU settings. In the minds of some families, the need for an ICU bed is the primary reason that palliative measures are now being recommended. When conflict surrounds decisions about level of care, it is the bedside ICU nurse who fields the questions, concerns, and emotions expressed by patients’ families.It is through such challenging decision making, in which no agreement is reached, that the moral climate is regrettably defined for all persons with a stake in the decision. However oppressive these disagreements feel to both health care professionals and patients’ family members, most often the disagreements, ironically, do not result from a lack of good intentions on either side of the debate. Rather, these circumstances reflect the complex ethical challenges that are inherent in contemporary health care settings. Clinical ethicists can be an important resource to health care teams, patients, and patients’ families in addressing these difficult challenges.Clinical ethicists who provide consultative services may be requested by the ICU team when conflicts such as the one surrounding the planning of Mrs H’s level of care arise. What are the characteristics, skills, and knowledge that make clinical ethicists a useful resource in helping to address conflict over decisions about level of care for stable but critically ill ICU patients?Clinical ethicists come from a diverse background of training: clinical and academic experiences that include but are not limited to medicine, nursing, social work, theology, philosophy, and anthropology. Most clinical ethicists have advanced academic degrees and/or training in clinical ethics. Despite this diversity in background, clinical ethicists engage in common functions: consultative services, research, education and the development of policies pertaining to patient care and organizational ethics.27–29Clinical ethicists are trained to view ethical problems within an interdisciplinary health care environment whose primary commitment should always be to provide the best patient care possible. Patient care and goals for care are best understood through the wishes, beliefs, and values of the patient and the patient’s family. The approach taken by clinical ethicists in providing consultation is to model interdisciplinary collaboration and effective communication with patients and their families, with the objective of enhancing ethical decision making.28–30In effect, clinical ethicists in cases such as the one involving Mrs H act as facilitators of communication and decision making about goals for care, while directing attention to the ethical considerations underlying such decisions. Generally, clinical ethicists can help clarify differences in the way ethical considerations such as sanctity or quality of life are valued on the basis of religious, personal, or cultural values. Some evidence suggests that ethics consultation generally has been useful in preventing or resolving conflicts, and in reducing the incidence of prolonged controversial treatment.31,32 Current trends in the training and education of clinical ethicists have emphasized skills, knowledge, and expertise better suited to provide ethics support in real time as dilemmas and conflict around decisions related to patient care unfold.28What is particularly important about the approach used by most clinical ethicists is the emphasis placed on fair and just processes for decisions of such importance and consequence in an ICU environment.In cases such as the one involving Mrs H, it is not just what decision ought to be made that is of interest to clinical ethicists, but if and why a particular decision is ethically defensible. If so, to whom is it ethically defensible? How ought discussions and conflicts be managed? These questions raise ethical concerns about justice, fairness, and a reasoned approach to decisions of such consequence. Ethical consideration must also be given to the moral climate, how people feel treated, and the concerns and opinions of key persons with a stake in the decision making, with overarching consideration given to trust in the process used to make such important decisions. Therefore clinical ethicists are as concerned with procedural fairness as they are with outcome when assisting with ethically challenging situations in health care settings.Principal aspects of procedural fairness are as follows: that the process for decision making be as transparent as possible to all involved; that concerns of key persons with a stake in the decision making be considered; that the reasons or rationale behind decisions can be understood and defended; that people responsible for decisions be held accountable; and that in the event disagreement occurs, decisions can be reviewed, taking into account the concerns of those who disagree.33 Process-driven approaches to decision making or to resolving conflict used by clinical ethicists are dependent on using frameworks to guide communication. Such frameworks for communication are not just ethically defensible; they have been shown empirically to be part of good practice standards in ICU settings.6,11,34 Lilly et al35(pS398) found that using a standardized framework for communication resulted in health care providers seeing decision making as a “process rather than as an event”—an attribute consistent with principles for ethical decision making.An example of such a framework to guide communication is described by Lautrette et al,34 who identify such attributes as timeliness, opportunities for the patient’s family to speak, use of appropriate and sensitive language, and ensuring that the setting is private and comfortable. In addition to these attributes, clinical ethicists would include discussion of the values in conflict and ethical obligations that underscore decision making.Frameworks for communication appear well supported in the literature anyway, so what makes the involvement of clinical ethicists of added benefit?Despite advances in implementing communication strategies in many settings, improvement in general is needed in managing communication, enhancing understanding, and meeting needs of ICU patients and their families.6,8,10,11 Furthermore, Sherwin36 believes that communication frameworks and hospital policies can be used coercively, to enforce a particular outcome, if those who lead these discussions or who adhere to policies are not reflecting on personal biases, institutional pressures, and ethical considerations.Clinical ethicists act as facilitators, helping to raise important ethical questions, model effective communication, and model ethical decision making by using teachable moments to heighten the awareness and understanding of the ethical considerations in each case. Within most health care settings, necessary and unavoidable imbalances in power are present between various persons who have a stake in the decision making. Clinical ethicists assist in discussing the values that underlie decisions of such importance, making these transparent to and understood by key involved parties. They model the principles of procedural fairness. Inherently challenging decisions about level of care, as in the case of Mrs H, are often met with challenging feelings and opinions, making fairness and ethical reflection more important than less to involved parties.Clinical ethicists advocate for policies and practices that reduce coercive consequences that can arise when members of the ICU treatment team, patients, or patients’ family members feel overruled or dismissed. In conducting an ethics consultation, the clinical ethicist leads discussions with the interdisciplinary team members about ethical considerations that contribute to moral distress, for example, the conflict in the way benefit and harm associated with a particular therapy or level of care are understood. In most instances, the clinical ethicist must ensure that concerns raised by members of the interdisciplinary team and concerns expressed by patients’ family members are shared and considered. This process is handled in an open and transparent manner. In creating an opportunity through the consultative process for the interdisciplinary team to address concerns, related to both areas of conflict and moral distress, clinical ethicists are also capitalizing on valuable teachable moments in which knowledge about ethics and decision making can be enhanced. As Kälvemark Sporrong et al37(p835) concluded, “Ethical competence is a key factor in preventing or reducing moral distress.”We have found that consultation on an individual case often helps treatment teams identify preventative strategies to reduce or avoid conflict and to engage in more timely discussion about ethics the next time a complex care situation arises. Such measures are necessary in creating a moral climate in which discussion about ethics in daily practice can be supported and thus reducing the effects or incidence of moral distress. The potential exists for all members of the interdisciplinary ICU team, including the most responsible physician, to be so engaged in ethical reflection and decision making on challenging cases. Clinical ethicists model skills of effective communication, ethical reflection, and decision making as well as principles of procedural fairness within the consultative process that they facilitate.We are not suggesting that effective communication, procedural fairness, ethical reflection, and decision making are deficient whenever clinical ethicists are not involved in such cases. In reality, complex and ethically challenging cases occur routinely in ICU settings, most often without the involvement of clinical ethicists. What is being proposed is that clinical ethicists should be seen as a valuable resource for addressing challenging cases in the ICU. Better understanding is needed about the role of clinical ethicists and the kinds of assistance they can provide.In most cases, the ICU team and patient’s family agree on recommendations that comfort measures be provided on a medical intermediate care unit or a palliative care unit for a stable but critically ill patient. However, as in the case of Mrs H, these decisions may be met with considerable emotion from the patient’s family and with differences of opinion about benefit and the appropriate level of care. We think that clinical ethicists can be a valuable resource when challenging cases arise. By providing consultation, clinical ethicists can model effective communication, ethical reflection, and decision making, while following principles of procedural fairness, all of which are key elements to upholding ethics in daily practice and are of particular importance when conflict occurs about level of care in the ICU.The following are practical considerations for critical care nurses:

What is translational genomics? An expanded research agenda for improving individual and population health

While ethics are recognized as an integral part of information systems (IS) research, many questions about the role of ethics in research practice remain unanswered. Our report responds to this emerging set of concerns with a broad and integrative account of five perspectives on ethics in IS research and design science research (DSR) in particular. Our report is informed by a broad literature review, a panel discussion at DESRIST 2020, and substantial personal experience from wrestling with ethical considerations in the field. The report provides a comprehensive discussion of prevailing perspectives on ethics and the implications for IS research. Together, we hope the report will inspire more ethics-conscious and responsible IS research. © 2022 by the Association for Information Systems.

Introduction: Studying trial communities: anthropological and historical inquiries into ethos, politics and economy of medical research in Africa P. Wenzel Geissler Engagements Chapter 1. Writing Knowledge and Acknowledgement: Possibilities in Medical Research Susan Reynolds Whyte Chapter 2. Can one Rely on Knowledge? Marilyn Strathern Chapter 3. Being 'with MRC': Infant Care and the Social Meanings of Cohort Membership in Gambia's Plural Therapeutic Landscapes Melissa Leach and James Fairhead Chapter 4. Contextualising Ethics in AIDS Research: or, the Morality of Knowledge Production in Ethnographic Fieldwork on 'the Unspeakable' Hansjorg Dilger Chapter 5. Testing a New Drug for Leprosy: Clofazimine and its Precursors in Ireland and Nigeria, 1944-1966 John Manton Chapter 6. Elucidating Ethics in Practice -- Focus on Accountability George Ulrich Evidence Chapter 7. When Physicians Meet: Local Medical Knowledge and Global Public Goods Steven Feierman Chapter 8. The Plausibility Design, Quasi-Experiments, and Real World Research: a Case Study from the Interdisciplinary Monitoring Project for Antimalarial Combination Treatment in Tanzania S. Patrick Kachur Chapter 9. Remember Bambali: Evidence, Ethics and the Co-Production of Truth Ann Kelly Chapter 10. Foetuses, Facts and Frictions: Insights from Ultrasound Research in Tanzania Babette Muller-Rockstroh Chapter 11. Healers and Scientists: The Epistemological Politics of Research about Medicinal Plants in Tanzania or 'Moving Away from Traditional Medicine' Stacey A. Langwick Chapter 12. Parasite Lost. Remembering Modern Times with Kenyan Government Medical Scientists P. Wenzel Geissler Chapter 13. Is the Sharia of the Doctors Killing the People? A Local Debate on Ethics and the Control of HIV/AIDS in a Rural Area in Kenya Suzette Heald Politics Chapter 14. The Historical Interface between the State and Medical Science in Africa: Kenya's Case Kenneth S. Ombongi Chapter 15. The intimate rules of the French Cooperation: Morality, Race and the Postcolonial Division of Scientific Work at the Pasteur Institute of Cameroon Guillaume Lachenal Chapter 16. The Mosquito Taken at the Beer-Hall': Malaria Research and Control on Zambia's Copperbelt Lyn Schumaker Chapter 17. Trial Communities: HIV and Therapeutic Citizenship in West Africa Vin-Kim Nguyen Chapter 18. Differences in Medicine, Differences in Ethics: or, When is it Research and When is it Kidnapping or is That Even the Right Question? Luise White Index

Community Psychology research that seeks to disrupt oppressive systems is fraught with ethical complexities, more so when it involves people with non-normative sexual/gender identities in contexts such as South Africa. The field demands researchers to negotiate the quagmires resulting from the inadequacy of ‘principlesim’ (Onuoha C, Bioethics Across Borders: An African Perspective. Uppsala University, Uppsala, 2007) and the ‘Regulatory Ethics’ favoured by institutional Research Ethics Committees to guide research (von Unger, H. Qualitative Inquiry, 22(2), 87–98, 2016). Similarly, research with marginalised populations that employs liberatory methodological approaches demands the creation of space for queer visibilities, and the privileging of local epistemes and subjectivities (Turker, A. Queer Visibilities: Space, identity and interaction in Cape Town. Chichester, West Sussex: John Willey & Sons, 2009). Given that the regulatory approach to ethics is problematised in Community Psychology scholarship for its inadequacy to respond to differential power dynamics; the history of research institutions vis-a-vis the communities we do research with, often experienced as epistemic violence; and the discordant conceptualisations of consent, beneficence, and harm – this chapter considers the position of ethics in research with marginalized populations as ongoing, critical, and dialogical. Reflecting on a study with non-gay identifying men who have sex with men, I embrace the decolonial feminist research agenda, seeing it as an opportunity to reconsider ethics in research and attend to the unjust erasure of marginalised sexual/gender subjectivities. The chapter frames the issue of ethics not from a perspective of a 'regulatory enterprise', but rather as intrinsically aligned to reflexivity; working against the affinity between research and epistemic violence. I discuss the means I adopted to navigate across epistemic (dis)articulations resulting from incompatible research frameworks and methods. To counter potential epistemic violence, I argue for a reflexive ethics anchored in decolonial feminist perspectives, and a methodological promiscuity that reconsiders ethics in practice.