Guideline 20 of the updated International Ethics Guidelines for Health‐related Research Involving Humans (2016) by the Council for International Organizations of Medical Sciences (CIOMS) provides guidance on research in disasters and disease outbreaks against the background of the need to generate knowledge quickly, overcome practical impediments to implementing such research, and the need to maintain public trust. The guideline recommends that research ethics committees could pre‐screen study protocols to expedite ethical reviews in a situation of crisis, that pre‐arrangements be (...) made regarding data sharing and biomedical sample sharing, and that sponsors and research ethics committees seek to minimize risk to researchers conducting research during a disaster. This paper critiques these recommendations against the background of the findings of a survey of public health officials and chairs of research ethics committees in the Caribbean during 2016, which sought to determine the best template for the expeditious ethical review of research proposals in emergency and epidemic situations in the Caribbean, and whose findings can serve as a model for other low‐ and middle‐income countries. (shrink)

Background: In disaster situations, nurses may face new and unfamiliar ethical and legal challenges not common in their everyday practice. Research question/objectives/hypothesis: The aim of this study was to explore Iranian nurses’ experience of disaster response and their perception of the competencies required by nurses in this environment. Research design: This article discusses the findings of a descriptive study conducted in Iran in 2012. Participants and research context: This research was conducted in Iran in 2012. Participants included 35 nurses who (...) had experience in healthcare delivery following a disaster event in the past 10 years, either in a hospital or out-of-hospital context. Ethical considerations: This research study was approved by the Ethics Committee of the Isfahan University of Medical Sciences. Findings: From this study, five themes emerged as areas that nurses require competence in to work effectively in the disaster setting. This article focusses on one theme, the ethical and legal issues that arise during disaster response. Within the theme of ethical and legal issues, two sub-themes emerged. (1) Professional ethics explores professional responsibility of nurses as well as sense of ethical obligation. (2) Adherence to law refers to nurses’ familiarity with and observation of legal requirements. Discussion: This article adds to a growing pool of literature which explores the role of nurses in disasters. The findings of this study emphasize the need for nurses working in the disaster setting to be aware of professional responsibilities and familiar with legal requirements and the challenges related to observing ethical responsibilities. Conclusion: In highlighting these issues, this article may provide a useful starting point for the development of an educational framework for preparing nurses and other health professionals to work in the disaster setting. (shrink)

Various forms of research are essential in emergency, disaster and disease outbreak situations, but challenges exist including the long length of time it takes to get research proposals approved. Consequently, it would be very advantageous to have an acceptable model for efficient coordination and communication between and among research ethics committees/IRBs and ministries of health, and templates for expediting ethical review of research proposals in emergency and epidemic situations to be used across the Caribbean and in other low (...) and middle income countries. This project involved a literature search and the interviewing of ministry of health officials, public health practitioners, and research ethics committee/IRB members in Jamaica and St. Lucia, to obtain suggestions for the best model for efficient coordination and communication between research ethics committees, and developed a template for expediting review of research protocols in epidemic and emergency conditions. (shrink)

Background: In 2019, an outbreak of COVID-19 broke out in Hubei, China. Medical workers from all over the country rushed to Hubei and participated in the treatment and care of COVID-19 patients. These nurses, dedicated to their professional practice, volunteered to provide compassion and expert clinical care during the pandemic. As with other acts of heroism, the ethical dilemmas associated with working on the front line must be considered for future practice. Purpose: To explore the ethical dilemmas of frontline nurses (...) of Jiangsu Province in China during deployment to Wuhan to fight the novel coronavirus pneumonia, and to provide a basis for developing strategies to help nursing staff address personal and practice concerns in order to work more effectively during this pandemic and other disasters in the future. Research design and method: Using the phenomenological research method and the purpose sampling method, semi-structured interviews were conducted with 10 nurses, post-deployment to Wuhan, who had worked on the front line to fight the novel coronavirus. Ethical considerations: The research proposal was approved by the Research Ethic Committee of Yangzhou University, China. Findings: From the analysis of the interviews of the 10 participants, three main themes were identified: ethical dilemmas in clinical nursing, ethical dilemmas in interpersonal relationships, and ethical dilemmas in nursing management. Conclusion: During a quick response to public health emergencies, where nurses are deployed immediately as a call to action, the issues surrounding ethical dilemmas from several perspectives must be considered. This research suggests that a team approach to proactive planning and open communication during the emergency is an efficient and productive strategy to improve the nurses’ experience and sense of well-being. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Nuclear Power after Fukushima 2011:Buddhist and Promethean PerspectivesGraham ParkesDuring 2010 many environmentalists previously opposed to nuclear power were deciding, in the face of anthropogenic climate change from burning fossil fuels, that the only way to prevent runaway global warming would be to build more nuclear power plants after all.1 There are risks involved—though fewer than with carbon-based sources of energy.2 When one compares the detrimental effects of nuclear power (...) with those of burning fossil fuel, it is clear that the human injury and death toll (not to mention environmental devastation) resulting from the former have been nothing compared to the damage caused by the extraction and consumption of fossil fuels, owing to mining accidents, oil spills, and so forth—not to mention the massive carbon dioxide emissions.On the other hand, the problem of how and where to store the growing amount of radioactive waste from nuclear power plants, which remains deadly for many thousands of years, has yet to be solved. Costly security measures have to be taken to guard against terrorist attacks and theft of materials usable for nuclear devices. When full safety features are included, nuclear power plants become ever more expensive to build, and the costs of insuring them against accidents are so prohibitive that governments have to subsidize them, which they are increasingly unwilling to do.Not long after the explosions and meltdowns at the Fukushima Daiichi nuclear power station in March 2011, two dismal world records were announced: in 2010 we discharged a record amount of carbon dioxide (more than 30 gigatons) into the atmosphere, mainly by burning fossil fuels, and, as a direct consequence, carbon dioxide levels in the atmosphere (as measured at the Earth Systems Research Laboratory in Hawai'i) reached a record level of 395 parts per million. These figures suggest that we are continuing to generate a rise in global average temperatures that is already destroying the livelihoods of millions and will soon jeopardize the lives of hundreds of millions more.As a consequence of the 2011 Fukushima disaster, Japan—long a leading promoter of nuclear power—has begun to enforce some widely neglected safety regulations and is seriously reconsidering its reliance on nuclear energy. China has put construction of [End Page 89] new power plants on hold. Other nations (such as Germany, Italy, Switzerland, Thailand, and Malaysia) have decided to phase out or cancel plans to build more nuclear power stations. Yet the primary motivations remain unclear, since people's attitudes toward the dangers of nuclear radiation are anything but rational—as evidenced by the mass departure of foreigners from Japan after the catastrophe at Fukushima, when health dangers beyond the vicinity of the power station were minimal.In Europe, the reaction to the Fukushima disaster has clearly been aggravated by memories of the catastrophe at Chernobyl in 1986. While Chernobyl was a more widely destructive event than Fukushima, releasing a much greater amount of radioactivity, its effects on human health continue to generate disagreement. According to the third report on the effects of the Chernobyl catastrophe issued by the United Nations Scientific Committee on the Effects of Atomic Radiation (UNSCEAR), among the 134 plant staff and emergency workers who suffered acute radiation syndrome (ARS), the condition proved fatal for twenty-eight of them. By 2006 another nineteen ARS survivors died, although their deaths were not directly attributable to the effects of ionizing radiation. Although the report attributes "a substantial fraction" of the six thousand cases of thyroid cancer in people who were children at the time of the accident to their consumption of milk contaminated with iodine-131, only fifteen cases had proved fatal by 2005, some twenty years later.3 The death toll, then, was fewer than fifty.By contrast, a study by a group of scientists from Belarus, Russia, and the Ukraine, Chernobyl: Consequences of the Catastrophe for People and the Environment, estimates the number of deaths attributable to the meltdown at around 980,000—almost twenty thousand times greater than the estimate by the UN scientific committee.4 What are we to make of this vast discrepancy, especially since the UNSCEAR report "was prepared in close cooperation with... (shrink)

Ethical Considerations at the Intersection of Psychiatry and Religion aims to give mental health professionals a conceptual framework for understanding the role of R/S in ethical decision-making and serve as practical guidance for approaching challenging cases. Part I addresses general considerations, including the basis of therapeutic values in a pluralistic context, the nature of theological and psychiatric ethics, spiritual issues arising in diagnosis and treatment, unhealthy and harmful uses of religion, and practical implications of personal spirituality. Part II examines how (...) these considerations apply in specific contexts: inpatient and outpatient, consultation-liaison, child and adolescent, geriatric, disability, forensic, community, international, addiction and disaster and emergency psychiatry, as well as in the work of religious professionals, ethics committees, psychiatric education, and research. Thick descriptions of case examples analyzed using the framework of Jonson and Winslow show the clinical relevance of understanding the contributions of religion and spirituality to patient preferences, quality of life, decision making, and effective treatment. (shrink)

Objective To develop an ethically, legally, and clinically appropriate ventilator allocation policy for AdventHealth Tampa and AdventHealth Carrollwood in Tampa, Florida, which could be enacted swiftly during the Covid-19 pandemic. Methods During Spring 2020, a subcommittee of the Medical Ethics Committee established consensus on the fundamental principles of the policy, then built on existing ethical, legal, and clinical guidance. Results The plan was finalized in May 2020. The plan triages patients based on exclusion criteria (imminent mortality), prognosis and expected (...) benefit of ventilation (using the Sequential Organ Failure Assessment), and change in prognosis over time. Decisions are made by committee in order to minimize moral distress among individual patient care providers. Conclusions Due to international concerns about healthcare resource shortages during the Covid-19 pandemic, hospitals need allocation policies informed by the crisis standard of care, the hospital’s ethical duty to plan for an emergency, and federal civil rights laws Policy Implications: This type of policy can serve as a model for other institutions to develop crisis standards of care resource allocation policies, which are a necessary component of disaster planning. (shrink)

Any plausible position in the ethics of war and political violence in general will include the requirement of protection of civilians (non-combatants, common citizens) against lethal violence. This requirement is particularly prominent, and particularly strong, in just war theory. Some adherents of the theory see civilian immunity as absolute, not to be overridden in any circumstances whatsoever. Others allow that it may be overridden, but only in extremis. The latter position has been advanced by Michael Walzer under the heading of (...) “supreme emergency.” In this paper, I look into some of the issues of interpretation and application of Walzer’s “supreme emergency” view and some of the criticisms that have been levelled against it. I argue that Walzer’s view is vague and unacceptable as it stands, but that the alternatives proposed by critics such as Brian Orend, C.A.J. Coady, and Stephen Nathanson are also unattractive. I go on to construct a position that is structurally similar to Walzer’s, but more specific and much less permissive, which I term the “moral disaster” view. According to this view, deliberate killing of civilians is almost absolutely wrong. (shrink)

Context The conduct of medical research led by Northern countries in developing countries raises ethical questions. The assessment of research protocols has to be twofold, with a first reading in the country of origin and a second one in the country where the research takes place. This reading should benefit from an independent local ethical review of protocols. Consequently, ethics committees for medical research are evolving in Africa. Objective To investigate the process of establishing ethics committees and their independence. Method (...) Descriptive study of 25 African countries and two North American countries. Data were recorded by questionnaire and interviews. Two visits of ethics committee meetings were conducted on the ground: over a period of 3 months in Kigali (Rwanda) and 2 months in Washington DC (USA). Results 22 countries participated in this study, 20 from Africa and two from North America. The response rate was 80%. 75% of local African committees developed into national ethics committees. During the last 5 years, these national committees have grown on a structural level. The circumstances of creation and the general context of underdevelopment remain the major challenges in Africa. Their independence could not be ensured without continuous training and efficient funding mechanisms. Institutional ethics committees are well established in USA and in Canada, whereas ethics committees in North America are weakened by the institutional affiliation of their members. Conclusion The process of establishing ethics committees could affect their functioning and compromise their independence in some African countries and in North America. (shrink)

This article aims to open a discussion on better ethical assurance for non-university research actors drawing on democratic norms. It derives from the author’s experience of a gap in ethical assurance for social science and humanities (SSH) research that takes place outside academia, for example within international organisations, public bodies, non-governmental organisations (NGOs) and by private entities. Many of these actors commission, conduct or sub-contract research activities involving human participants on a regular basis, an activity that often increases during times (...) of crisis where researchers in both the public and private sphere scramble to generate the new knowledge necessary to respond and prevent further harms. The ethical assurance frameworks for such research, while growing, remain limited. Discussion of research conducted by actors outside of university settings and their ethical assurance frameworks are both subjects under-interrogated within the literature. This paper seeks to open that discussion by presenting this broad non-university research context through the frame of research in crisis settings, where the ethical requirements of ‘do no harm’ and the ‘dual imperative’ possess an even heavier significance in research ethics. Furthermore, the global and diverse nature of crisis settings often gives rise to conversations concerning the positioning of the research actor and the need to empower the research participant. This paper presents an early vision of the non-university research actor and ethical assurance process based on the democratic norms of equality and inclusivity. (shrink)

Disaster Bioethics: Normative Issues When Nothing Is Normal, edited by Dónal P. O’Mathúna, Bert Gordijn, and Mike Clarke, is reviewed. This volume is the second in a series addressing public health ethics and is comprised of 13 chapters contributed by individual authors and divided into two sections. Although this is not a monumental work, it is one of importance. It asks more questions than it answers, which is fitting in an emerging discipline. It will serve to shape and focus future (...) research and debate. Not all contributions are of equal import, but each has something to contribute to the discussion. (shrink)

The particular dynamics of public health emergencies urge scientists and Ethics Committee (EC) members to change and adapt their operating procedures to function effectively. Despite having previous pandemic experiences, ethics committees were unprepared to adapt to COVID-19 pandemic challenges. This survey aims to learn and thoroughly discuss the most salient issues for ECs during the COVID-19 pandemic. The results indicate that the main problems faced by ECs were lack of/insufficient regulations, lack of data/experience/knowledge, sloppy review, poor research design, and (...) poor adaptation to quarantine measures. Coping with factors that threaten the autonomy and independence of ECs, the ethical dilemma regarding maximizing common good versus protecting the rights and well-being of study participants, comprehending the change in the context of vulnerable populations, and redefining the role of ECs to strengthen trust in science and vaccine confidence were outstanding issues. (shrink)

Background: The high disease burden of Africa, the emergence of new diseases and efforts to address the 10/90 gap have led to an unprecedented increase in health research activities in Africa. Consequently, there is an increase in the volume and complexity of protocols that ethics review committees in Africa have to review. Methods: With a grant from the Bill and Melinda Gates Foundation, the African Malaria Network Trust (AMANET) undertook a survey of 31 ethics review committees (ERCs) across sub-Saharan Africa (...) as an initial step to a comprehensive capacity-strengthening programme. The number of members per committee ranged from 3 to 21, with an average of 11. Members of 10 institutional committees were all from the institution where the committees were based, raising prima facie questions as to whether independence and objectivity could be guaranteed in the review work of such committees. Results: The majority of the committees (92%) cited scientific design of clinical trials as the area needing the most attention in terms of training, followed by determination of risks and benefits and monitoring of research. The survey showed that 38% of the ERC members did not receive any form of training. In the light of the increasing complexity and numbers of health research studies being conducted in Africa, this deficit requires immediate attention. Outcome: The survey identified areas of weakness in the operations of ERCs in Africa. Consequently, AMANET is addressing the identified needs and weaknesses through a 4-year capacity-building project. (shrink)

The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries (...) perceive as the key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members. Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants’ vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster setting over and above those typically encountered in global health research to achieve meaningful community engagement. Disaster research presents distinctive ethical considerations that require attention to ensure that participants are protected. As RECs review disaster research protocols, they should address these concerns and consider how justification, vulnerability, security and confidentially, and community engagement are shaped by the realities of conducting research in a disaster. (shrink)

The problem of antimicrobial resistance is so dire that people are predicting that the era of antibiotics may be coming to an end, ushering in a ‘post-antibiotic’ era. A comprehensive policy response is therefore urgently needed. A part of this response will require framing the problem in such a way that adequately reflects its nature as well as encompassing an approach that has the best prospect of success. This paper considers framing the problem as a slowly emerging disaster, including its (...) potential benefits and difficulties, from a conceptual and policy perspective. (shrink)

This clinical ethics case examines whether to provide a blood transfusion to a severely injured Jehovah's Witness patient who initially agreed to the transfusion but changed her mind after speaking with a friend. The ethics committee analyzed several key issues: how to handle information from friends about a patient's religious beliefs when unconscious, the validity of advance directives, concerns about potential coercion in the patient's change of mind, and how to balance respect for religious beliefs against immediate medical needs. (...) The committee recommended that while unconscious, life-saving treatment should proceed given limited verifiable information about the patient's wishes. Once conscious, if the patient maintains a competent refusal after thorough discussion of risks and consideration of possible coercion, her decision should be respected even if it conflicts with medical recommendations. They emphasized the importance of consulting hospital Jehovah's Witness liaison services and documenting all discussions while exploring non-blood alternatives when possible. (shrink)

This article outlines current safe harbors in the law for healthcare practitioners who work in a disaster setting. It reviews available legal protection in crisis situations with respect to the Emergency Medical Treatment and Labor Act (EMTALA), criminal liability, and licensure.

With the ultrahigh-speed, large-scale development of tourism and the increasing frequency, intensity, and scope of extreme natural hazards in the context of climate warming, tourism has entered a high-risk era. Based on the central urban area within the outer ring of Shanghai as the research area and the tourism attraction as the research object, this paper takes the flood scenario simulation combined with GIS network analysis to evaluate the spatial accessibility of the emergency response of urban key public service (...) departments under current and future river flood scenarios in different return periods. The results of the study show that, under the current and future flood scenarios, the submergence range is mainly distributed within 2 ∼ 3 km along the banks of the Huangpu River, and it tends to increase from north to south; there are 6, 9, and 21 tourism attractions in the emergency blind area under the once-in-a-century floods in 2010, 2030, and 2050 and 98, 105, and 112 tourism attractions in the emergency blind area under the once-in-a-millennium floods in 2010, 2030, and 2050, respectively; in the flood scene, local road traffic in the inundation area is interrupted by water, and 120 first aid cannot get or be delayed to some tourist attraction ; and in 2030, under the normal and flooding scenarios, 120 first aid in the downtown area of Shanghai has the fastest route to tourism attractions according to the speed of S1, S2, S3, and S4. The flooding intensity, road traffic conditions, and the number and location of key public service departments jointly determine the service scope and response time of medical emergency in urban floods. Since the flood control area of the central city in Shanghai is mainly distributed in the 2 ∼ 3 km area on both banks of the Huangpu River, the impact of flood on the emergency medical service in the entire central city is limited, mainly in some hospitals in the riverside area, where 120 emergency vehicles are unable or delayed to reach some tourism attractions. The research indicates that the quantitative assessment method of spatial accessibility of the emergency response under flood scenario simulation has important scientific value and practical significance, which can provide decision-making basis for emergency management of tourism in China’s urban flood disaster. (shrink)

Abstract -/- The Crisis and Disaster Management process (CDMP) is composed of several clearly defined phases. Strategic risk assessment; preparation and planning, effective response and recovery, and post-crisis evaluation. It is essential for those facing such threats to understand, appreciate, and implement the appropriate responses for each phase. Public service organizations, or PSOs, are increasingly charged with additional duties and responsibilities that historically were not part of their original purview. PSOs are currently forced to operate within an environment of increasing (...) political unrest and social chaos. Events of international magnitude now impact the domestic environment. These organizations must deal with negative media, hostile public backlash, increased scrutiny, and calls for greater accountability. Service organizations are currently faced with increasing political and social chaos, with widespread civil unrest, domestic and international threats of terrorism, human trafficking and illegal migration, public health emergencies, natural disasters, and diverse climate-related challenges. These conditions have fostered additional layers of responsibility to already overburdened first responders and their civil support partners. The consequences are significant. These previously mentioned burdens are further compounded by budgetary constraints, greater regulatory compliance, and organizational accountability. In other words, agencies and departments are expected to do more with less, much more with much less. -/- DOI: 10.5772/intechopen.108408. (shrink)

Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for research studies including (...) interventional and observational studies. WHO-ERC provided the reviews within on average 6 working days. The WHO-ERC often could not provide immediate approval of protocols for reasons which were not Ebola Virus Disease specific but related to protocol inconsistencies, missing information and complex informed consents. WHO-ERC considerations on Ebola Virus Disease specific issues are presented. To accelerate study approval in future public health emergencies, we recommend: internally consistent and complete submissions with information documents in language participants are likely to understand, close collaboration between local and international researchers from research inception, generation of template agreements for data and sample sharing and use during the ongoing global consultations on bio-banks, formation of Joint Scientific Advisory and Data Safety Review Committees for all studies linked to a particular intervention or group of interventions, formation of a Joint Ethics Review Committee with representatives of the Ethics Committees of all institutions and countries involved to strengthen reviews through the different perspectives provided without the ‘opportunity costs’ for time to final approval of multiple, independent reviews, direct information exchange between the chairs of advisory, safety review and ethics committees, more Ethics Committee support for investigators than is standard and a global consultation on criteria for inclusion of pregnant women and children in interventional studies for conditions which put them at particularly high risk of mortality or other irreversible adverse outcomes under standard-of-care. (shrink)

Disaster scholars have long complained that their field is theory light: they are much better at doing and saying than analyzing. The paucity of theory doubtless reflects an understandable focus on case studies and practical solutions. Yet this works against big picture thinking. Consequently, both our comprehension of social suffering and our ability to mitigate it are fragmented. Communitas is exemplary here. This refers to the improvisational acts of mutual help, collective feeling and utopian desires that emerge in the wake (...) of disasters. It has been observed for as long as there has been a sociology of disasters. Within the field, there have been numerous efforts to name and describe it. Yet there has been far less enthusiasm to theorize it, which means that the disaster literature has not adequately explained the social conditions under which communitas arises (or fails to). In this article, we synthesize numerous case studies to do so. This takes us beyond simple statements of what communitas is and what it should be called, to considerations of the conditions under which it emerges, how it should be conceptualized, the factors that might prevent communitas, and how we might encourage it. While primarily a theoretical work, the identification of communitas’ facilitators and barriers have practical import for disaster risk reduction (DRR) policy as communitas has frequently proven to be a positive and potent force. (shrink)

Recent ethics guidelines from the World Health Organization (WHO) on monitored emergency use (MEURI) state that, during a public health emergency, prospective ethical review and oversight of the use of unproven interventions outside of the context of research is an ethical principle or criterion for its permissible use. In this chapter, we argue that this new role of ethics committees in the review, authorization and oversight of emergency use outside research is a developing conceptual innovation against the (...) background of ethics documents such as the Declaration of Helsinki of the World Medical Association and the WHO earlier guidelines on “compassionate use” and MEURI. To support this claim, we offer definitions of key terms in this emerging literature and a clear methodological framework of practical analysis before presenting a literature review of relevant guidelines that focus on the presence or absence of the criterion of independent ethical review of emergency use of unproven interventions outside research. We close by discussing the future of the criterion of ethical review and oversight including questions around the greater normative complexity, both ethical and regulatory of monitored emergency use in comparison with research, the mutual influence between emergency and non-emergency use contexts, and questions of access pathways with and without committees as part of a rapidly-evolving emerging ethical literature. (shrink)

Issues of resource allocationResource allocation, triageTriage, and rationingRationing decisions are common in the context of disasters and public healthPublic health emergencies, such as pandemics. However, to date, the majorityMajority of the literature focuses on an adult population with very little attention given to a pediatric population or to a population that may be mixed: adults and children. Furthermore, decisions of rationingRationing scarce resources do not only occur during disasters and other wide-scale emergencies. Such decisions are commonplace in pediatric (...) organ transplantation and can creep into areas of experimental medicine, such as xenotransplantation. This chapter explicates differences between pediatric and adult triageTriage decisions by first looking at the trifold issues of resource allocationResource allocation, triageTriage, and rationingRationing decisions mainly in the context of a disaster situation or public healthPublic health emergency. However, the issues of pediatric organ transplantation, health disparitiesHealth disparities, and experimental medicine will also be covered. (shrink)

_Disaster Psychiatry: Intervening When Nightmares Come True_ captures the state of disaster psychiatry in the aftermath of the terrorist attacks of September 11, 2001. This emergent psychiatric specialty, which is increasingly separated from trauma and grief psychiatry on one hand and military psychiatry on the other, provides psychotherapeutic assistance to victims during, and in the weeks and months following, major disasters. As such, disaster psychiatrists must operate in the widely varying locales in which natural and man-made disasters occur, (...) and they must establish their role among the chaotic array of organizations involved in direct disaster response. Editors Anand Pandya and Craig Katz have captured the challenge and promise of disaster psychiatry through first-person narratives. We hear from psychiatrists who have encountered disasters at various stages of their career and in widely varying social, political, and personal contexts. Accounts of psychiatric involvement with adults and children during and after 9/11 have understandable pride of place in this collection. But they are balanced by richly informative narratives about other domestic and international disasters. Fraught with the drama attendant to the events they describe, these essays delineate the dizzying array of challenges that confront the disaster psychiatrist. They range from the intense emotional responses that are part of the aftermath of any disaster, to the need to legitimize a psychiatric presence within diverse cultural and medical contexts, to the subtle task of providing therapeutic boundaries at a time when all rules seem to be suspended. Special attention is given to the daunting task of working with children whose parents' are disaster victims. What emerges from these testimonies is compelling documentation of skilled and compassionate psychiatrists at the outer limits of their specialty, pursuing their calling into uncharted realms of therapeutic engagement. (shrink)

This paper reviews the actual and potential use of social media in emergency, disaster and crisis situations. This is a field that has generated intense interest. It is characterised by a burgeoning but small and very recent literature. In the emergencies field, social media (blogs, messaging, sites such as Facebook, wikis and so on) are used in seven different ways: listening to public debate, monitoring situations, extending emergency response and management, crowd-sourcing and collaborative development, creating social cohesion, furthering (...) causes (including charitable donation) and enhancing research. Appreciation of the positive side of social media is balanced by their potential for negative developments, such as disseminating rumours, undermining authority and promoting terrorist acts. This leads to an examination of the ethics of social media usage in crisis situations. Despite some clearly identifiable risks, for example regarding the violation of privacy, it appears that public consensus on ethics will tend to override unscrupulous attempts to subvert the media. Moreover, social media are a robust means of exposing corruption and malpractice. In synthesis, the widespread adoption and use of social media by members of the public throughout the world heralds a new age in which it is imperative that emergency managers adapt their working practices to the challenge and potential of this development. At the same time, they must heed the ethical warnings and ensure that social media are not abused or misused when crises and emergencies occur. (shrink)

Background Between 2013 and 2016, West Africa experienced the largest ever outbreak of Ebola Virus Disease. In the absence of registered treatments or vaccines to control this lethal disease, the World Health Organization coordinated and supported research to expedite identification of interventions that could control the outbreak and improve future control efforts. Consequently, the World Health Organization Research Ethics Review Committee was heavily involved in reviews and ethics discussions. It reviewed 24 new and 22 amended protocols for research studies (...) including interventional and observational studies. WHO-ERC reviews WHO-ERC provided the reviews within on average 6 working days. The WHO-ERC often could not provide immediate approval of protocols for reasons which were not Ebola Virus Disease specific but related to protocol inconsistencies, missing information and complex informed consents. WHO-ERC considerations on Ebola Virus Disease specific issues are presented. Conclusions To accelerate study approval in future public health emergencies, we recommend: internally consistent and complete submissions with information documents in language participants are likely to understand, close collaboration between local and international researchers from research inception, generation of template agreements for data and sample sharing and use during the ongoing global consultations on bio-banks, formation of Joint Scientific Advisory and Data Safety Review Committees for all studies linked to a particular intervention or group of interventions, formation of a Joint Ethics Review Committee with representatives of the Ethics Committees of all institutions and countries involved to strengthen reviews through the different perspectives provided without the ‘opportunity costs’ for time to final approval of multiple, independent reviews, direct information exchange between the chairs of advisory, safety review and ethics committees, more Ethics Committee support for investigators than is standard and a global consultation on criteria for inclusion of pregnant women and children in interventional studies for conditions which put them at particularly high risk of mortality or other irreversible adverse outcomes under standard-of-care. (shrink)

This article seeks to make sense of the rise of global religious philanthropy in relation to disaster. Global religious philanthropy refers to the transnational activities of religious organizations to respond to humanitarian crisis. These organizations can be faith-based initiatives or religious groups or denominations that have created humanitarian services for the specific purpose of relief and recovery in other countries. The first part spells out what we mean by the rise of global religious philanthropy in disaster response. It is not (...) so much a shift as it is a rediscovery of the religious roots of humanitarian work. But at the same time, it is also a contemporary development that is part of the globalization of risk, humanitarian aid, and religion itself. The second part will explain the rise in two ways. First, faith-based and religious organizations hold what we describe as a global imaginary. In this imaginary, the world is in crisis and it offers an opportunity to demonstrate global compassion. Second, the rise of global religious philanthropy is also tied to the expansion of religious movements, some of which are in emerging economies. The expansion renders the religious field competitive. This is why, in a paradoxical manner, their humanitarian activities are also acts of strength and power that contend with the state and other players in the religious field. (shrink)

Background: Since 2010, the United States has experienced 228 disasters, affecting over 86 million people. Because of population shifts, the growing number of people living with chronic conditions or disabilities, and the growing number of older citizens living independently, access and service gaps often exist for those without money or other transferable resources. There is a lack of evidence regarding individual community members’ capacity to prepare for emergencies. Research objective: The purpose of this study is to highlight participant experiences (...) in becoming better prepared for emergencies and provide insight from a social justice perspective. Research design: This is a descriptive qualitative study, staying very close to the data as an end product rather than a beginning for interpretation. Participants and research context: A total of 13 low-income, uninsured, or under-insured attendees at a medical outreach clinic were interviewed. Ethical considerations: Institutional Review Board approval was obtained from the University of Texas at Tyler. Findings: Four themes emerged from the interview data: (a) evaluation of the emergency-preparedness education, (b) making emergency plans, (c) challenges in preparing for emergencies, and (d) facilitators of emergency preparedness. Discussion: Identifying the potential challenges to individual emergency preparedness among vulnerable populations is the first step in overcoming them. The capacity to comply with such measures, especially the ability of those with limited incomes and other vulnerable populations, must be considered. Conclusion: Synchronized, well-ordered assistance will close gaps in recovery and enhance efficiency in pre- and post-event aid. Theoretically, doing so will promote engaged and resilient members of society who are better able to withstand adverse events. The importance of the relationship between individual preparedness levels and the resiliency of nations supports the social justice imperative to address the needs of vulnerable populations in the mitigation and planning phase of the emergency management cycle. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Disaster Anarchy: Mutual Aid and Radical Action by Rhiannon FirthJohn-Erik HanssonRhiannon Firth. Disaster Anarchy: Mutual Aid and Radical Action. London: Pluto Press, 2022. Paperback, 243 pp. ISBN 9780745340463The COVID-19 pandemic and the unfolding climate crisis, with the multiplication of unprecedented weather events, have shown how urgent it is to reflect on our responses to disaster. Following up on themes she first broached in Coronavirus, Class, and Mutual Aid (...) in the United Kingdom, Rhiannon Firth throws a fresh, anarchist, and utopian light on disaster relief in Disaster Anarchy.1 In this work, Firth seeks to “consider how [anarchist] social movements’ impressive efforts in mutual aid might contribute to a radical and revolutionary reconceptualisation of disasters and the processes of relief and recovery efforts” (19). To do so, she begins by surveying the dominant approaches to disaster relief (chapters 2 and 3) before offering a comprehensive anarchist theoretical critique of these perspectives (chapter 4). Firth then fleshes out her anarchist theory of disaster and community response through two empirical case studies of grassroots relief efforts. In chapter 5 she looks into the Occupy Sandy movement, a New York area community-based response to the damage caused by Hurricane Sandy’s passage in October 2012 in the United States. The final chapter is then dedicated to the COVID-19 Mutual Aid Groups that emerged in the United Kingdom during the pandemic.In building her argument, Firth mobilizes anarchist (and more broadly radical) theory and interviews with participants in both movements. She engages with how activists motivated and understood their participation in mutual aid groups, perceived disaster and relief organizing, sought to solve practical and political problems, and reflected on their experiences. The empirical sections of Disaster Anarchy are thus reminiscent of investigations into the anarchist connections and orientations of contemporary social movements, such as Occupy Wall Street.2 However, Firth’s is a work [End Page 606] of political theory. Her interviews were not conducted simply to describe and analyze the anarchist components of disaster relief social movements. Echoing Uri Gordon, she proposes to take the “worldviews of activists seriously as sources of theoretical knowledge,” leading us to rethink both anarchism and the politics of disaster as a whole (16).3 There lies a key part of the originality of Firth’s contribution to both anarchist theory and to the study of disaster relief. The utopian core of Disaster Anarchy also shines through this movement-based theoretical elaboration of an anarchist challenge to the dominant theories and practices of disaster relief. By examining mutual aid groups in critical dialogue with anarchist theory, Firth raises the possibility of more egalitarian and democratic “utopian alternatives to the status quo,” though, as she reminds us, they always run the risk of being co-opted (20).To set the scene for the desirability of anarchist approaches to disaster relief, Disaster Anarchy opens with Firth’s dissatisfaction with what she identifies as the two main sets of approaches to disaster studies. The first represents “the dominant neoliberal paradigm of disaster politics” and falls under the umbrella of “Disaster Risk Reduction (DRR)” (21). Firth contends that, despite some internal variety, all DRR approaches share the three same basic assumptions. First, DRR considers disasters to be “ruptures in the normal functioning of society.” They become a “management problem” that must be dealt with using the tools of political governance to restore order and ensure “systemic stability” (39–40). This can be done both directly through state institutions, and through civil society-based nongovernmental organizations (NGOs) that cooperate with state institutions. DRR then evaluates responses using the categories of “efficiency and cost-effectiveness,” leaving aside “the affects and human impacts of disasters” (40). Second, DRR tends to flatten out differences between disasters, and in the ways in which individuals and groups respond to them. Disaster becomes abstract, and authorities can design sets of responses taken to be effective regardless of local contexts and demands. DRR approaches are therefore particularly congenial to the growth of large governmental “specialised agencies like DHS [Department of Homeland Security] and FEMA [Federal Emergency Management Agency]” that produce knowledge and practices linked to the vertical “management of disaster” (41). Finally... (shrink)

Conducting research during or in the aftermath of disasters poses many specific practical and ethical challenges. This is particularly the case with research involving human subjects. The extraordinary circumstances of research conducted in disaster settings require appropriate regulations to ensure the protection of human participants. The goal of this study is to systematically and qualitatively review the existing ethical guidelines for disaster research by using the constant comparative method. We performed a systematic qualitative review of disaster research ethics guidelines (...) to collect and compare existing regulations. Guidelines were identified by a three-tiered search strategy: 1) searching databases, 2) an Internet search, and 3) a search of the references in the included documents from the first two searches. We used the constant comparative method for analysis of included guidelines. Fourteen full text guidelines were included for analysis. The included guidelines covered the period 2000-2014. Qualitative analysis of the included guidelines revealed two core themes: vulnerability and research ethics committee review. Within each of the two core themes, various categories and subcategories were identified. Some concepts and terms identified in analyzed guidelines are used in an inconsistent manner and applied in different contexts. Conceptual clarity is needed in this area as well as empirical evidence to support the statements and requirements included in analyzed guidelines. (shrink)

China is located in the intersection area of two seismic zones. Due to this special geographical location, earthquake disasters occur frequently in China. Earthquake emergency rescue work is one of the key construction works of disaster prevention and mitigation in China. This paper mainly studies the earthquake disaster rescue model based on the complex adaptive system theory and establishes the earthquake disaster rescue model by analyzing the complex adaptive system theory and combining the earthquake rescue process. In this (...) paper, through the task allocation mechanism task, the disaster rescue task is divided into simple task and complex task, and the executive task subject is divided into single task subject and multitask subject. On the basis of considering the shortest emergency rescue time goal and the goal of maximizing the deployment utility of rescue team, the reasonable deployment of a rescue team is realized through a complex adaptive system, that is, the deployment utility of the rescue team is maximized. In this paper, the simulation experiment and comparison of the earthquake disaster rescue model based on the complex adaptive system theory are carried out. The experimental results show that the model used in this paper is better than the other two models in terms of algorithm convergence, rescue number, and overall score; in different scenarios, the relative survival probability of the model in this paper is 58.92%, 67.85%, and 77.46%, and the proportion of the wounded rescued is 66.31%, 76.45%, and 83.06%, which were higher than those of the other two models. The earthquake disaster rescue model based on the complex adaptive system theory proposed in this paper provides an effective theoretical basis and method system for postdisaster emergency rescue decision making and enhances and improves the emergency response ability to deal with large-scale geological disaster events. (shrink)

Disaster response is a highly collaborative and critical process that requires the involvement of multiple emergency responders (ERs), ideally working together under a unified command, to enable a rapid and effective operational response. Following the 9/11 and 11/13 terrorist attacks and the devastation of hurricanes Katrina and Rita, it is apparent that inadequate communication and a lack of interoperability among the ERs engaged on-site can adversely affect disaster response efforts. Within this context, we present a scenario-based terrorism case study (...) to highlight the challenges of operational disaster command and response. In this article, which is based on the French emergency response doctrine, we outline a semantics-based common operational command system that is designed to guarantee an efficient information flow among ERs. Our focus is on offering to all ERs, a real-time operational picture of the situation in order to enable multilevel coordination among firefighters, police, healthcare units, public authorities, and other stakeholders. Our approach consolidates information to promote timely sharing of data among ERs. The proposed system is based on an ontology that has been developed to represent the different types of knowledge on the part of ERs, providing a shared vocabulary that covers a variety of interoperability concerns. (shrink)

Living with cancer: a state of perpetual emergency -- Notes -- References -- PART IV: Environmental aesthetics and resistance -- 12. The great turning -- 13. The underestimated power effects of the discourses and practices of the food justice movement -- Pessimist premise -- General system failure -- The transformative strength of the three Foucaults -- How practices and discourses of the food justice movement illustrate the three Foucaults -- The biopolitical disaster of industrial agriculture -- Via Campesina: peasant (...) knowledge, land and power -- Urban agriculture: eaters' resistance and practices for a new food system -- Slow Food: putting eaters' culture back into "agriculture" -- Conclusion: get your hands dirty! -- Acknowledgements -- References -- 14. Interrogating the neoliberal biopolitics of the sustainable development-resilience nexus -- The political genealogy of sustainable development -- From security to resilience -- The disastrous and politically debased subject of resilience -- Conclusion: development contra neoliberalism? -- References -- 15. The aesthetics of triage: Towards life beyond survival -- Mechanism of a triage -- Photographic triage -- The cinematic triage -- Beyond survival -- References -- 16. End piece: Dealing with disastrous life -- Extra/ordinary disasters -- Dread life -- Towards a new critical framework? -- References -- Index. (shrink)

The use of wireless, electronic, medical records and communications in the prehospital and disaster field is increasing. Objective: This study examines the role of wireless, electronic, medical records and com- munications technologies on the quality of patient documentation by emergency field responders during a mass-casualty exercise.

This book presents the first critical examination of the overlapping ethical, sociocultural, and policy-related issues surrounding disasters, global bioethics, and public health ethics. These issues are elucidated under the conceptual rubric: Public health disasters. The book defines PHDs as public health issues with devastating social consequences, the attendant public health impacts of natural or man-made disasters, and latent or low prevalence public health issues with the potential to rapidly acquire pandemic capacities. This notion is illustrated using Ebola (...) and pandemic influenza outbreaks, atypical drug-resistant tuberculosis, and the health emergencies of earthquakes as focal points. Drawing on an approach that reckons with microbial, existential, and anthropological realities; the book develops a relational-based global ethical framework that can help address the local, anthropological, ecological, and transnational dynamics of the ethical issues engendered by public health disasters. The book also charts some of the critical roles that relevant local and transnational stakeholders may play in translating the proposed global ethical framework from the sphere of concept to the arena of action. This title is of immense benefit to bioethics scholars, public and global health policy experts, as well as graduate students working in the area of global health, public health ethics, and disaster bioethics. (shrink)

Disaster research has grown in scope and frequency. Research in the wake of disasters and during humanitarian crises – particularly in resource-poor settings – is likely to raise profound and unique ethical challenges for local communities, crisis responders, researchers, and research ethics committees. Given the ethical challenges, many have questioned how best to provide research ethics review and oversight. We contribute to the conversation concerning how best to ensure appropriate ethical oversight in disaster research and argue that ethical disaster (...) research requires of researchers and RECs a particular sort of ongoing, critical engagement which may not be warranted in less exceptional research. We present two cases that typify the concerns disaster researchers and RECs may confront, and elaborate upon what this ongoing engagement might look like – how it might be conceptualized and utilized – using the concept of real-time responsiveness. The central aim of RTR, understood here as both an ethical ideal and practice, is to lessen the potential for research conducted in the wake of disasters to create, perpetuate, or exacerbate vulnerabilities and contribute to injustices suffered by disaster-affected populations. Well cultivated and deployed, we believe that RTR may enhance the moral capacities of researchers and REC members, and RECs as institutions where moral agency is nurtured and sustained. (shrink)

Background Social responsibility can motivate disaster relief nurses to devote themselves to safeguarding rights and interests of people when facing challenges that threaten public health. However, few studies focused on the relationship of moral courage, job-esteem, and social responsibility among disaster relief nurses. Objective To explore the influence of moral courage and job-esteem on the social responsibility in disaster relief nurses and clarify the relationship model between them. Methods A cross-sectional study was conducted among 716 disaster relief nurses from 14 (...) hospitals in central China through an online survey, including moral courage scale, job-esteem scale, and social responsibility questionnaire. The data were analyzed by Pearson’s correlation, and the mechanism of the effect of moral courage and job-esteem on social responsibility was completed. Ethical considerations This study was approved by the Medical Ethics Committee of the Second Xiangya Hospital of Central South University (Approval Number: 2019016). Results Disaster relief nurses’ moral courage positively impacted social responsibility (r = 0.677, p < 0.01), and moral courage could affect social responsibility through the mediating role of job-esteem. Conclusion Job-esteem mediated between moral courage and social responsibility among disaster relief nurses. Nursing managers regular assessment of nurses’ moral courage and interventions such as meetings and workshops can reduce moral distress, foster morally courageous behavior, enhance job-esteem, and improve social responsibility performance among disaster relief nurses. (shrink)

Ethics for Disaster addresses the moral aspects of the aftermath of natural disasters such as hurricanes, earthquakes, and tornadoes. The book explores how these catastrophes illuminate the existing inequalities in society, combining a unique philosophical approach with new moral thinking. Zack stresses the obligation of both individuals and government in preparing for and responding to dangerous times, forcefully arguing for the preservation of normal moral principles even in times of crisis and national emergency.

BackgroundOver the past two decades, Uganda has experienced a significant increase in clinical research driven by both academia and industry. This has been combined with a broader spectrum of research proposals, with respect to methodologies and types of intervention that need evaluation by Research Ethics Committees (RECs) with associated increased requirement for expertise. We assessed the competencies of REC members regarding review of research protocols with complex and emerging research study designs. The aim was to guide development of a training (...) curriculum to improve the quality of scientific and ethical review.MethodsThis was a cross-sectional study design, with quantitative data collection methods. Research Ethics Committee members completed a structured pre-coded questionnaire on current competence with complex and emerging study design. REC members were asked to outline a list of additional topics for which they needed training. Data from coded questions were entered into Epidata Version 3.1 and then exported to STATA Version14.1 for analysis. Descriptive analysis was performed and findings are presented using percentages and frequencies.ResultsWe enrolled 55 REC members from 6 RECs who have a total of 97 members. The majority of whom were males (56.4%, n = 31/55). The level of competence for review of selected study design was lowest for Controlled Human Infection Model (10.9%, n = 6) and reverse pharmacology design (10.9%, n = 6), and highest for cluster randomized study design (52.7%, n = 29) and implementation science research (52.7%, n = 29).ConclusionCompetence for review of research protocols with complex and emerging study design was low among participating REC members. We recommend prioritising training of REC members on complex and emerging study designs to enhance quality of research protocol review. (shrink)

The return of individual research results and incidental findings from biobanking research is a much debated ethical issue globally but has extensive relevance in India where the burden of out of pocket health care expenses is high for the majority. The views of 21 ethics committee (EC) members and 22 researchers from Bengaluru, India, concerning the ethics of biobanking research were sought through in‐depth interviews using an unfolding case vignette with probes. A shared view among most was that individual (...) research results which are ‘actionable’ or have ‘clinical significance’ should be returned to the sample contributors through their treating physicians. This was seen as an ethical obligation and a moral duty on the side of the researcher to “give back” to the person who contributed to the research. The challenges foreseen were that of resources, both financial and personnel, for the time and counseling needed to accompany the disclosure of results. Perceptions of ‘ownership’ appear to influence the concept of benefit sharing. While benefit sharing in financial terms was considered ethically challenging, certain researchers and ethics committee members made a case for “two way altruism” where the researcher in return for the altruistic ‘valuable contribution’, shares with the contributor/ community, benefits of the research which could include research findings, improved patient care, and more affordable access to the new diagnostic tests or products arising from the research. This defines the emerging ethic of “giving back” which goes beyond individual rights and ensures reciprocity and distributive justice. (shrink)

American healthcare -- Bioterror and bioart -- State of emergency -- Licensed to torture -- Hunger strikes -- War -- Cancer -- Drug dealing -- Toxic tinkering -- Abortion -- Culture of death -- Patient safety -- Global health -- Statue of security -- Pandemic fear -- Bioidentifiers -- Genetic genocide.

When the Karen Ann Quinlan case emerged in the mid-1970s and the New Jersey Supreme Court made mention of the role that ethics committees might play in such cases, no one could have predicted at the time what the consequences of that observation might be. It took a while for momentum to build, but we are now seeing the flowering of what is an important movement in the field of bioethics: the interplay of ethics committees and broader societal issues.

In his article ‘The Ebola Clinical Trials: a precedent for research ethics in disasters’, Philippe Calain constructs a compelling case as to why and how experiences from the recent Ebola epidemic should be used to develop a framework for disaster research ethics. In particular, Calain proposes a useful model for assessing whether or not an unproven intervention could be suitable for human use in a disaster context, and makes a powerful argument against the separation of patient care from research (...) goals. In this commentary, I argue that the separation of patient care goals from research goals is also unhelpful in the context of other forms of participant disadvantage even when that disadvantage is less severe than an ongoing public health emergency. I contend that recognising that research in disadvantaged populations is an intervention that could and should aim to produce positive outcomes for participants, just as it should in disaster contexts, therefore seems a well-justified lesson that can be extrapolated from the experience of the Ebola epidemic. (shrink)

Although Directive 2001/20/EC of the European Parliament and of Council of 4 April 2001 on the approximation of the laws regulations and administrative provisions of the Member States relating to the implementation of good clinical practice in the conduct of clinical trials on medicinal products for human use does not contain an exception for emergency situations, and requires the informed consent of a legal representative in all cases where research is conducted on legally competent individuals who are unable to (...) give informed consent, in Poland, emergency research can be conducted without consent. Polish regulations on emergency research can hardly be treated as a result of intentional legislative policy. Our provisions arise from multiple and sophisticated interpretations of different regulations that govern medical experiments on human subjects and clinical trials. These interpretations can be summarized as follows: There are two categories of medical experiments: therapeutic and non-therapeutic experiments. Emergency research without consent may be conducted in the category of therapeutic experiment only.. Emergency research may be conducted without consent if there is a situation of great urgency in which the research subject’s life is in danger and there is no possibility of obtaining immediate consent from the research subject him or herself, or from his or her legal representative or guardianship court, and the research subject has not refused to give consent for the participation in an emergency therapeutic experiment. The legal representative or guardianship court shall be provided with all the relevant information concerning subject’s participation in an experiment as soon as possible. All projects of emergency research with intent to be done without the research subject’s consent must be approved by an independent bioethics committee. Because these five requirements seem to provide insufficient protection for a subject’s autonomy and rights it is necessary to add to them two other conditions: the emergency research could not be conducted using other research participants capable of giving informed consent; and informed consent for continued participation in the emergency research shall be obtained from either the participant him or herself or the legally authorized representative as soon as possible. A consolidated single Act that will govern all aspects of medical experiments on human subjects, including emergency research, should be prepared and enacted as soon as possible. (shrink)

In the years following World War II, and increasingly during the 1960s and 1970s, professional scientific societies developed internal sub-committees to address the social implications of their scientific expertise. This article explores the early years of one such committee, the American Society of Human Genetics’ “Social Issues Committee,” founded in 1967. Although the committee’s name might suggest it was founded to increase the ASHG’s public and policy engagement, exploration of the committee’s early years reveals a more (...) complicated reality. Affronted by legislators’ recent unwillingness to seek the expert advice of human geneticists before adopting widespread neonatal screening programs for phenylketonuria, and feeling pressed to establish their relevance in an increasingly resource-scarce funding environment, committee members sought to increase the discipline’s expert authority. Painfully aware of controversy over abortion rights and haunted by the taint of the discipline’s eugenic past, however, the committee proceeded with great caution. Seeking to harness interest in and assert professional control over emerging techniques of genetic diagnosis, the committee strove to protect the society’s image by relegating ethical and policy questions about their use to the individual consciences of member scientists. It was not until 1973, after the committee’s modest success in organizing support for a retrospective public health study of PKU screening and following the legalization of abortion on demand, that the committee decided to take a more publicly engaged stance. (shrink)