Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the (...) Science, Health and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

How are we to appraise new technological developments that may bring revolutionary social changes? Currently this is often done by trying to predict or anticipate social consequences and to use these as a basis for moral and regulatory appraisal. Such an approach can, however, not deal with the uncertainties and unknowns that are inherent in social changes induced by technological development. An alternative approach is proposed that conceives of the introduction of new technologies into society as a social experiment. An (...) ethical framework for the acceptability of such experiments is developed based on the bioethical principles for experiments with human subjects: non-maleficence, beneficence, respect for autonomy, and justice. This provides a handle for the moral and regulatory assessment of new technologies and their impact on society. (shrink)

The urgent drive for vaccine development in the midst of the current COVID-19 pandemic has prompted public and private organisations to invest heavily in research and development of a COVID-19 vaccine. Organisations globally have affirmed the commitment of fair global access, but the means by which a successful vaccine can be mass produced and equitably distributed remains notably unanswered. Barriers for low-income countries include the inability to afford vaccines as well as inadequate resources to vaccinate, barriers that are exacerbated during (...) a pandemic. Fair distribution of a pandemic vaccine is unlikely without a solid ethical framework for allocation. This piece analyses four allocation paradigms: ability to develop or purchase; reciprocity; ability to implement; and distributive justice, and synthesises their ethical considerations to develop an allocation model to fit the COVID-19 pandemic. (shrink)

A number of ethical frameworks have been proposed to support decision-making in public health and the evaluation of public health policy and practice. This is encouraging, since ethical considerations are of paramount importance in health policy. However, these frameworks have various deficiencies, in part because they incorporate substantial ethical positions. In this article, we discuss and criticise a framework developed by James Childress and Ruth Bernheim, which we consider to be the state of the art in (...) the field. Their framework distinguishes aims, such as the promotion of public health, from constraints on the pursuit of those aims, such as the requirement to avoid limitations to liberty, or the requirement to be impartial. We show how this structure creates both theoretical and practical problems. We then go on to present and defend a more practical framework, one that is neutral in avoiding precommitment to particular values and how they ought to be weighted. We believe ethics is at the very heart of such weightings and our framework is developed to reflect this belief. It is therefore both pluralist and value-based. We compare our new framework to Childress and Bernheim’s and outline its advantages. It is justified by its impetus to consider a wide range of alternatives and its tendency to direct decisions towards the best alternatives, as well as by the information provided by the ranking of alternatives and transparent explication of the judgements that motivate this ranking. The new framework presented should be useful to decision-makers in public health, as well as being a means to stimulate further reflection on the role of ethics in public health. (shrink)

Paper providing an ethical framework for stem cell research in Europe.

There is an ethical dilemma present when considering updating predictive clinical artificial intelligence (AI) models, which should be part of the departmental quality improvement process. One needs to consider whether withdrawing the AI model is necessary to obtain the relevant information from a naive patient population or whether to use causal inference techniques to obtain this information. Withdrawing an AI model from patient care might pose challenges if the AI model is considered standard of care, while use of causal (...) inference will not be reliable if the relevant statistical assumptions do not hold true. Hence, each of these two updating strategies is associated with patient risks, but lack of reliable data might endanger future patients. Similarly, not withdrawing an outdated AI might also expose patients to risk. Here I propose a high level ethical framework – epistemic risk management - that provides guidance for which route of model updating should be taken based on the likelihood of the assumptions used during the creation of the original AI model and the assumptions required for causal inference holding true. This approach balances our uncertainty about the status of the AI as standard of care with the risk of not obtaining the necessary data, so as to increase the probability of benefiting current and future patients for whose care the AI is being used. (shrink)

On March, 24, 2020, 818 cases of COVID-19 had been reported in New South Wales, Australia, and new cases were increasing at an exponential rate. In anticipation of resource constraints arising in clinical settings as a result of the COVID-19 pandemic, a working party of ten ethicists was convened at the University of Sydney to draft an ethics framework to support resource allocation decisions. The framework guides decision-makers using a question-and-answer format, in language that avoids philosophical and medical (...) technicality. The working party met five times over the following week and then submitted a draft Framework for consideration by two groups of intensivists and one group of academic ethicists. It was also presented to a panel on a national current affairs programme. The Framework was then revised on the basis of feedback from these sources and made publicly available online on April 3, ten days after the initial meeting. The framework is published here in full to stimulate ongoing discussion about rapid development of user-friendly clinical ethics resources in ongoing and future pandemics. (shrink)

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework that (...) offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. -/- Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. -/- Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. -/- Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue. (shrink)

Calls are increasing for American health care to be organized as a learning health care system, defined by the Institute of Medicine as a health care system “in which knowledge generation is so embedded into the core of the practice of medicine that it is a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in care.” We applaud this conception, and in this paper, we put forward a new ethics framework for it. No (...) such framework has previously been articulated. The goals of our framework are twofold: to support the transformation to a learning health care system and to help ensure that learning activities carried out within such a system are conducted in an ethically acceptable fashion. (shrink)

In March 2020, the Government produced a document entitled “Responding to COVID-19: The Ethical Framework for Adult Social Care”(‘The Ethical Framework’). In this article, we summarise the key features of the proposed ethical framework and subject it to critical analysis. We highlight three primary issues. First, the emphasis placed on autonomy as the primary ethical principle. We argue if ever there was a context in which autonomy should dominate the ethical analysis, this (...) is not it. Second, we examine the interface between ethics and law which is largely overlooked in the document. Finally, we explore the surprising lack of attention paid to the concept of responsibility and communal obligations within the framework. (shrink)

As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication (...) of incidental findings in imaging research. We conducted an interview study with a purposive sample of researchers at research facilities across the Netherlands. Based on a qualitative analysis of these interviews and on existing guidelines found in the literature, we developed a prototype ethical framework, which was critically assessed and fine-tuned during a two-day international expert meeting with bioethicists and representatives from large population-based imaging studies from the United Kingdom, Germany, Sweden and Belgium. Practices and policies for the handling of incidental findings vary strongly across the Netherlands, ranging from no review of research scans and limited feedback to research participants, to routine review of scans and the arrangement of clinical follow-up. Respondents felt that researchers do not have a duty to actively look for incidental findings, but they do have a duty to act on findings, when detected. The principle of reciprocity featured prominently in our interviews and expert meeting. We present an ethical framework that may guide researchers and research ethics committees in the design and/or evaluation of appropriate pathways for the handling of incidental findings in imaging studies. The framework consists of seven steps: anticipation of findings, information provision and informed consent, scan acquisition, review of scans, consultation on detected abnormalities, communication of the finding, and further clinical management and follow-up of the research participant. Each of these steps represents a key decision to be made by researchers, which should be justified not only with reference to costs and/or logistical considerations, but also with reference to researchers’ moral obligations and the principle of reciprocity. (shrink)

In this article, we propose the Fair Priority Model for COVID-19 vaccine distribution, and emphasize three fundamental values we believe should be considered when distributing a COVID-19 vaccine among countries: Benefiting people and limiting harm, prioritizing the disadvantaged, and equal moral concern for all individuals. The Priority Model addresses these values by focusing on mitigating three types of harms caused by COVID-19: death and permanent organ damage, indirect health consequences, such as health care system strain and stress, as well as (...) economic destruction. It proposes proceeding in three phases: the first addresses premature death, the second long-term health issues and economic harms, and the third aims to contain viral transmission fully and restore pre-pandemic activity. -/- To those who may deem an ethical framework irrelevant because of the belief that many countries will pursue "vaccine nationalism," we argue such a framework still has broad relevance. Reasonable national partiality would permit countries to focus on vaccine distribution within their borders up until the rate of transmission is below 1, at which point there would not be sufficient vaccine-preventable harm to justify retaining a vaccine. When a government reaches the limit of national partiality, it should release vaccines for other countries. -/- We also argue against two other recent proposals. Distributing a vaccine proportional to a country's population mistakenly assumes that equality requires treating differently situated countries identically. Prioritizing countries according to the number of front-line health care workers, the proportion of the population over 65, and the number of people with comorbidities within each country may exacerbate disadvantage and end up giving the vaccine in large part to wealthy nations. (shrink)

How are we to appraise new technological developments that may bring revolutionary social changes? Currently this is often done by trying to predict or anticipate social consequences and to use these as a basis for moral and regulatory appraisal. Such an approach can, however, not deal with the uncertainties and unknowns that are inherent in social changes induced by technological development. An alternative approach is proposed that conceives of the introduction of new technologies into society as a social experiment. An (...) ethical framework for the acceptability of such experiments is developed based on the bioethical principles for experiments with human subjects: non-maleficence, beneficence, respect for autonomy, and justice. This provides a handle for the moral and regulatory assessment of new technologies and their impact on society. (shrink)

Background: Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks (including ethical theories, principles, and concepts) to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. Objectives and Methods: This qualitative systematic review was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in (...) surrogate decision-making research. Findings: Seven research papers explicitly identified ethical theories, principles, or concepts, such as autonomy, substituted judgment, and best interest standards as guidelines for the research. Surrogate decision making themes included the responsibilities and goals of being a surrogate, factors influencing surrogates’ decision making, outcomes for surrogates, and an overarching theme of “wanting to do the right thing” for their loved one and/or themselves. Discussion: Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Conclusion: Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision-making research that explores surrogates’ end-of-life care planning experiences. (shrink)

This paper proposes an ethical framework for rationing publicly financed health care. We begin by classifying alternative rationing criteria according to their ethical basis. We then examine the ethical arguments for four rationing criteria. These alternatives include rationing high technology services, non-basic services, services to patients who receive the least medical benefit, and services that are not equally available to all. We submit that a just health care system will not limit basic health care to persons (...) unable to pay for it. Furthermore, justice in health care requires limiting publicly-financed non-basic health care, striving for equality in access to basic health care, and relying on medical benefit to ration non-basic health care. (shrink)

Human connection is universally important, particularly in the context of serious illness and at the end of life. The presence of close family and friends has many benefits when death is close. Hospital visitation restrictions during the Coronavirus pandemic therefore warrant careful consideration to ensure equity, proportionality, and the minimization of harm. The Australian and New Zealand Society for Palliative Medicine COVID-19 Special Interest Group utilized the relevant ethical and public health principles, together with the existing disease outbreak literature (...) and evolving COVID-19 knowledge, to generate a practical framework of visiting restrictions for inpatients receiving palliative and end-of-life care. Expert advice from an Infectious Diseases physician ensured relevance to community transmission dynamics. Three graded levels of visitor restrictions for inpatient settings are proposed, defining an appropriate level of minimum access. These depend upon the level of community transmission of COVID-19, the demand on health services, the potential COVID-19 status of the patient and visitors, and the imminence of the patient’s death. This framework represents a cohesive, considered, proportionate, and ethically robust approach to improve equity and consistency for inpatients receiving palliative care during the COVID-19 pandemic and may serve as a template for future disease outbreaks. (shrink)

Background: As a normative theory, care ethics has become widely theorized and accepted. However, there remains a lack of clarity in relation to its use in practice, and a care ethics framework for practice. Maternity care is fraught with ethical issues and care ethics may provide an avenue to enhance ethical sensitivity. Aim: The purpose of this scoping review is to determine how care ethics is used amongst health professions, and to collate the information in data charts (...) to create a care ethics framework and definition for midwifery practice. Method: The scoping review was conducted according to the Preferred Reporting Items for Scoping reviews (PRISMA-ScR) and Joanna Briggs Institute (JBI) recommendations. The search was applied to the databases CINAHL, MEDLINE, PschInfo and Pubmed which were searched in September 2019 and again in July 2021. The inclusion criteria were guided by the mnemonic for search terms: Participants, Concept, and Context (PCC) and included variations of health care professionals, care ethics and utilization. The search was limited to qualitative studies published in English between 2010 and 2021. A data extraction tool was used to extract and synthesize data into categories. The articles were screened for eligibility by title, abstract and full text review, by two independent reviewers. Ethical Considerations: The scoping review was guided by ethical conduct respecting authorship and referencing sources. Results: Twelve of the initially identified 129 studies were included in the scoping review. Data synthesis yielded four categories of care ethics use by health professionals: relationship, context, attention to power and caring practices. In combination, the evidence forms a framework for care ethics use in midwifery practice. Conclusion: Care ethics use by health professionals enhances ethical sensitivity. A framework and definition for care ethics for midwifery practice is proposed. This review will be of interest to midwives and other health practitioners seeking to enhance ethical sensitivity. (shrink)

Although undergraduate engineering ethics courses often include the development of moral sensitivity as a learning objective and the use of active learning techniques, teaching centers on the transmission of cognitive knowledge. This article describes a complementary assignment asking students to perform an ethics “experiment” on themselves that has a potential to enhance affective learning and moral imagination. The article argues that the focus on cognitive learning may not promote, and may even impair, our efforts to foster moral sensitivity. In contrast, (...) the active learning assignments and exercises, like the ethics “experiment” discussed, offer great potential to expand the scope of instruction in engineering ethics to include ethical behavior as well as knowledge. Engineering ethics education needs to extend beyond the narrow range of human action associated with the technical work of the engineer and explore ways to draw on broader lifeworld experiences to enrich professional practice and identity. (shrink)

BackgroundExpanded access is the use of investigational drugs (IDs) outside of clinical trials. Generally it is performed in patients with serious and life-threatening diseases who cannot be treated satisfactorily with authorized drugs. Legal regulations of expanded access to IDs have been introduced among others in the USA, the European Union (EU), Canada and Australia. In addition, in the USA an alternative to expanded access is treatment under the Right-to-Try law. However, the treatment use of IDs is inherently associated with a (...) number of ethically relevant problems.Main textThe objective of this article is to present a coherent framework made up of eight requirements which have to be met for any treatment use of an ID to be ethical. These include a justified need for the use of an ID, no threat to clinical development of the ID, adequate scientific evidence to support the treatment, patient’s benefit as the primary goal of the use of an ID, informed decision of a patient, fair access of patients to IDs, independent review, as well as the dissemination of treatment results.ConclusionsWhile this framework is essentially consistent with the legal regulations of expanded access of the USA, the EU, Canada and Australia, it is substantially wider in scope because it addresses some important issues that are not covered by the regulations. Overall, the framework that we developed minimizes the risks and threats, and maximizes potential benefits to each of the four key stakeholders involved in the treatment use of IDs including patients, doctors, drug manufacturers, and society at large. (shrink)

The 1980s witnessed a dramatic increase in hostile takeovers in the United States. Proponents argue that well- planned mergers enhance the value of the firm and the value of the firm to society. Critics typically argue that undesired takeovers ultimately harm society due to external costs not borne by the acquiring firm. To be socially responsible, the manager must consider the effects of the merger/acquisition on all stakeholders. Different traditional ethical frameworks for decision making are proposed and reviewed. A (...) model is proposed. (shrink)

This paper addresses the just distribution of vaccines against the SARS-CoV-2 virus and sets forth an ethical framework that prioritises frontline and essential workers, people at high risk of severe disease or death, and people at high risk of infection. Section I makes the case that vaccine distribution should occur at a global level in order to accelerate development and fair, efficient vaccine allocation. Section II puts forth ethical values to guide vaccine distribution including helping people with (...) the greatest need, reducing health disparity, saving the most lives and promoting narrow social utility. It also responds to objections which claim that earlier years have more value than later years. Section III puts forth a practical ethical framework to aid decision-makers and compares it with alternatives. (shrink)

The ethics of managing obstetric patients in medical disasters poses ethical challenges that are unique in comparison to other disaster patients, because the medical needs of two patients—the pregnant patient and the fetal patient—must be considered. We provide an ethical framework for doing so. We base the framework on the justice-based prevention of exploitation of populations of patients, both obstetric and non-obstetric, in medical disasters. We use the concept of exploitation to identify a spectrum from ethically (...) acceptable, to ethically challenging, to ethically unacceptable, management of obstetric patients in medical disasters. We also address the ethics of the care of obstetric and neonatal patients when the resources of a hospital are completely overwhelmed in a large-scale medical disaster. (shrink)

This book provides a comprehensive description and ethical analysis of one of the most challenging areas: international health research. Furthermore, it provides a vivid portrait of the current situation of global governance for health research and its main challenges and suggests a comprehensive and universal ethical framework based on the existing theories and frameworks. This work is a must-read for all the students, scholars, professionals, activists, and policy-makers who are involved or interested in the global health research (...) enterprise and its governance and ethics. (shrink)

In the past decade, numerous ethical frameworks have been developed to support public health decision‐making in challenging areas. Before the COVID‐19 pandemic began, members of the authorship team were involved in research programmes, in which the development of ethical frameworks was planned, to guide (a) the use of new technologies for emerging infectious disease surveillance; and (b) the allocation of scarce supplies of pandemic influenza vaccine. However, as the pandemic evolved, significant practical challenges emerged that led to our (...) questioning the value of these frameworks. We now believe that a normative instrument, such as a framework, cannot adequately or reliably provide the ethical guidance that needs to be incorporated into public health decision‐making during natural disasters or infectious disease emergencies. Recently it has been suggested that there are potentially more dynamic, flexible, and effective ways to navigate decisions involving complex considerations entailed in policies and practices during a public health emergency. In this paper, we first outline the key functions of a public health ethics framework, before describing why we believe it would not be fit for purpose during a crisis. We end by considering whether proposed alternative methods to promote ethical public health decision‐making goals have the potential to meet these objectives. (shrink)

The research ethics framework put forward by McCradden et al. to support systematic inquiry in the development of artificial intelligence and machine learning technologies in healt...

Whereas in the 1970s early bioethicists believed that bioethics is an arena for the application of philosophical theories of utilitarianism, deontology, and natural law thinking, contemporary policy-oriented bioethicists seem rather to be keen on framing ethical issues through political ideologies. Bioethicists today are often labeled “liberal” or “communitarian,” referring to their different understandings of the relationship between the individual and society. Liberal individualism, with its conceptual base of autonomy, dignity, and privacy, enjoyed a long period of dominance in bioethics, (...) but it has increasingly come under attack from ideologies promoting a more salient role for concepts of solidarity, community, and public interest. (shrink)

Relocation is an increasingly prominent conservation tool for a variety of wildlife, but the technique also is controversial, even among conservation practitioners. An organized framework for addressing the moral dilemmas often accompanying conservation actions such as relocation has been lacking. Ecological ethics may provide such a framework and appears to be an important step forward in aiding ecological researchers and biodiversity managers to make difficult moral choices. A specific application of this framework can make the reasoning process (...) more transparent and give more emphasis to the strong sentiments about non-human organisms held by many potential users. Providing an example of the application of the framework may also increase the appeal of the reasoning process to ecological researchers and biodiversity managers. Relocation as a conservation action can be accompanied by a variety of moral dilemmas that reflect the interconnection of values, ethical positions, and conservation decisions. A model that is designed to address moral dilemmas arising from relocation of humans provides/demonstrates/illustrates a possible way to apply the ecological ethics framework and to involve practicing conservationists in the overall decision-making process. (shrink)

Volume 20, Issue 8, August 2020, Page 32-36.

Technologic advances mean automated, wearable cameras are now feasible for investigating health behaviors in a public health context. This paper attempts to identify and discuss the ethical implications of such research, in relation to existing guidelines for ethical research in traditional visual methodologies. Research using automated, wearable cameras can be very intrusive, generating unprecedented levels of image data, some of it potentially unflattering or unwanted. Participants and third parties they encounter may feel uncomfortable or that their privacy has (...) been affected negatively. This paper attempts to formalize the protection of all according to best ethical principles through the development of an ethical framework. Respect for autonomy, through appropriate approaches to informed consent and adequate privacy and confidentiality controls, allows for ethical research, which has the potential to confer substantial benefits on the field of health behavior research. (shrink)

The recently published BRAIN 2.0 Neuroethics Report offers a very helpful overview of the possible ethical, social, philosophical, and legal issues raised by neuroscience in the context of BRAIN’s research priorities thus contributing to the attempt to develop ethically sound neuroscience. In this article, we turn to a running theme of the document: the need for an ethical framework for the BRAIN Initiative and for further integration of neuroethics and neuroscience. We assess some of the issues raised (...) and provide an explanation of how we have addressed them in the Human Brain Project. We offer our experience in the HBP as a potential contribution to the international debate about neuroethics in the big brain initiatives. Our hope is that among other things, the type of exchange proposed by this AJOB special issue will prove productive in further identifying and discussing the issues and in inspiring appropriate solutions. (shrink)

The web is increasingly inhabited by the remains of its departed users, a phenomenon that has given rise to a burgeoning digital afterlife industry. This industry requires a framework for dealing with its ethical implications. We argue that the regulatory conventions guiding archaeological exhibitions could provide the basis for such a framework.

In their article, Char et al. have created a model intended to tidy up the messy landscape of ethical concerns arising from machine-learning health care applications. The novel con...

There are a number of agricultural farming practices that are controversial. These may include using chemical fertilizers, pesticides, and herbicides, and planting genetically modified crops, as well as the decision to dehorn cattle rather than raise polled cattle breeds. We use data from a survey of Missouri crop and livestock producers to determine whether a farmer’s ethical framework affects his or her decision to engage in these practices. We find that a plurality of farmers prefer an agricultural policy (...) that reflects principles based on rights rather than principles of utilitarianism or justice. Furthermore, after controlling for personal and farm characteristics, we find a positive correlation between farmers preferring a rights-based policy and a farmer’s use of chemical farm inputs and polled rather than horned cattle. We also find that a combination of ethical framework and farm and farmer characteristics correlate with decisions to use farm chemicals, while only farm and farmer characteristics affect the decision to plant GM crops and only a farmer’s ethical framework affects the decision to use polled cattle. (shrink)

Scientists have the ability to influence policy in important ways through how they present their results. Surprisingly, existing codes of scientific ethics have little to say about such choices. I propose that we can arrive at a set of ethical guidelines to govern scientists’ presentation of information to policymakers by looking to bioethics: roughly, just as a clinician should aim to promote informed decision-making by patients, a scientist should aim to promote informed decision-making by policymakers. Though this may sound (...) like a natural proposal, I show it offers guidance that conflicts with standard scientific practices. I conclude by considering one cost of the proposal: that it would prevent scientists from acting as advocates in a way that is currently common in certain fields. I accept that the proposal would restrict scientists’ political advocacy rights, but argue that the benefits of adopting it — promoting democratic governance — justify the restriction. (shrink)

Purpose The purpose of this paper is to develop an ethical framework for the marketing of corporate social responsibility. Methods The approach is a conceptual one based on virtue ethics and on the corporate identity literature. Furthermore, empirical research results are used to describe the opportunities and pitfalls of using marketing communication tools in the strategy of building a virtuous corporate brand. Results/conclusions An ethical framework that addresses the paradoxical relation between the consequentialist perspective many proponents (...) of the marketing of CSR adopt, and ethical perspectives which criticize an exclusive profit-oriented approach to CSR. Furthermore, three CSR strategies in relation to the marketing of CSR are discussed. For each CSR strategy it is explored how a corporation could avoid falling into the promise/performance gap. (shrink)

Background The recent proliferation of health care report cards, especially in cardiac care, has occurred in the absence of an ethical framework to guide in their development and implementation. An ethical framework is a consistent and comprehensive theoretical foundation in ethics, and is formed by integrating ethical theories, relevant literature, and other critical information (such as the views of stakeholders). An ethical framework in the context of cardiac care provides guidance for developing cardiac (...) report cards (CRCs) that are relevant and legitimate to all stakeholders. The purpose of this study is to develop an ethical framework for CRCs. Methods Delphi technique – 13 panelists: 2 administrators, 2 cardiac nurses, 5 cardiac patients, 2 cardiologists, 1 member of the media, and 1 outcomes researcher. Panelists' views regarding the ethics of CRCs were analyzed and organized into themes. Results We have organized panelists' views into ten principles that emerged from the data: 1) improving quality of care, 2) informed understanding, 3) public accountability, 4) transparency, 5) equity, 6) access to information 7) quality of information, 8) multi-stakeholder collaboration, 9) legitimacy, and 10) evaluation and continuous quality improvement. Conclusion We have developed a framework to guide the development and dissemination of CRCs. This ethical framework can provide necessary guidance for those generating CRCs and may help them avoid a number of difficult issues associated with existing ones. (shrink)

This paper expands on “An Ethics Framework for Making Resource Allocation Decisions within Clinical Care: Responding to COVID-19,” which is also published in this special issue of the Journal of Bioethical Inquiry. I first describe and explain the steps we took to develop this framework, drawing on previous experience and literature to explain what frameworks can and cannot do. I distinguish frameworks from other kinds of guidance and justify why our framework takes the form it does. Our (...) key aim was to help answer practical questions faced by frontline clinicians. I then explain some of the normative issues that shape the content of the framework itself. Here, I engage critically with the resource allocation literature and justify the particular positions that we take in the framework. Although we undertook this work to address resource allocation decisions anticipated during the unfolding COVID-19 pandemic, it will also serve as an example for others who wish to design practical ethics frameworks for other bioethical issues that will emerge in the future. (shrink)

(2001). A Neutral Ethical Framework for Understanding the Role of Disability in the Life Cycle. The American Journal of Bioethics: Vol. 1, No. 3, pp. 57-58.

Verbal autopsy presents the opportunity to understand the disease burden in many low-income countries where vital registration systems are underdeveloped and most deaths occur in the community. Advances in technology have led to the development of software that can provide probable cause of death information in real time, and research considering the ethical implications of these advances is necessary to inform policy. Our research explores these ethical issues in rural Nepal using a public health ethics framework. We (...) considered the burdens and benefits of VA and giving cause of death information to families of the deceased through qualitative research with VA interviewers, community members, national policy stakeholders and international academics. Burdens can be experienced differently, and it is important to balance the emotional burden of VA with utilization of the data to inform planning and increased access to health services. The training, support and supervision of VA interviewers should be prioritized if VA is taken to scale. Initial and ongoing community engagement is recommended in addition to engaging ethical, legal, health and policy personnel in developing protocols and systems. Integrating rigorous research while cautiously moving forward is recommended to ensure systems and responses to concerns are relevant to contexts. (shrink)

The use of drones in public healthcare is suggested as a means to improve efficiency under constrained resources and personnel. This paper begins by framing drones in healthcare as a social experiment where ethical guidelines are needed to protect those impacted while fully realizing the benefits the technology offers. Then we propose an ethical framework to facilitate the design, development, implementation, and assessment of drones used in public healthcare. Given the healthcare context, we structure the framework (...) according to the four bioethics principles: beneficence, non-maleficence, autonomy, and justice, plus a fifth principle from artificial intelligence ethics: explicability. These principles are abstract which makes operationalization a challenge; therefore, we suggest an approach of translation according to a values hierarchy whereby the top-level ethical principles are translated into relevant human values within the domain. The resulting framework is an applied ethics tool that facilitates awareness of relevant ethical issues during the design, development, implementation, and assessment of drones in public healthcare. (shrink)

This paper examines the relationship between gender and ethical decision models employed by managers. Subjects completed a survey that measured the extent to which they focused on actions or the outcomes of those actions in determining whether a behavior was ethical or not. The study also examined subjects' reactions to other managers' responses to ethical dilemmas. Results suggest that men and women do not differ in their underlying ethical models, that they do differ in the way (...) in which they evaluate others in ethical situations, and that ethical predispositions play an important role in those evaluations. (shrink)

We are appreciative of the broad range of commentaries our target article generated. The inquiry into the contingency phase of public health emergencies is nascent and the cl...

The history of the National Health Service research ethics system in the UK and some of the key drivers for its change into the present system are described. It is suggested that the key drivers were the unnecessary delay of research, the complexity of the array of processes and contradictions between research ethics committee (REC) decisions. It is then argued that the primary drivers for this change are and will be replicated by the systems of research ethics review being put (...) in place at UK universities in response to the Economic and Social Research Council research ethics framework. It is argued that this is particularly problematic for multi-centre review and for researchers who switch institutions. Finally, some potential solutions to this problem and their feasibility are discussed. (shrink)

This paper is about the actual and potential development of an ethics that is appropriate to the practices and institutions of biobanking, the question being how best to develop a framework within which the relevant ethical questions are first identified and then addressed in the right ways. It begins with ways in which a standard approach in bioethics – namely upholding a principle of individual autonomy via the practice of gaining donors’ informed consent – is an inadequate (...) class='Hi'>ethical framework for biobanking. In donating material to a biobank, the individual donor relinquishes a degree of control and knowledge over the way their material is used in large-scale and typically open ended projects; and the identifying nature of genetic material means that third parties have rights and interests which must be taken into account as well as those of the individual donor. After discussing the problems for informed consent in the biobanking context, the paper then considers three emerging alternative approaches which, broadly speaking, conceptualize the subject of biobanking ethics in communal or co-operative terms: one version sees participants in biobanking research as ‘shareholders’ whilst the other expands on the notion of participation to include the wider public beneficiaries of biobanking as ‘stakeholders’. It concludes by outlining a third view, on which the biobanking institution itself is conceived as an ethical subject whose defining function can do useful normative work in guiding and evaluating its activities. (shrink)