The use of Ethics Decision‐Making Frameworks by Canadian Ethics Consultants: A Qualitative Study

In this study, Canadian healthcare ethics consultants describe their use of ethics decision‐making frameworks. Our research finds that ethics consultants in Canada use multi‐purpose ethics decision‐making frameworks, as well as targeted frameworks that focus on reaching an ethical resolution to a particular healthcare issue, such as adverse event reporting, or difficult triage scenarios. Several interviewees mention the influence that the accreditation process in Canadian healthcare organizations has on the adoption and use of such frameworks. Some of the ethics consultants we interviewed also report on their reluctance to use these tools. Limited empirical work has been done previously on the use of ethics decision‐making frameworks. This study begins to fill this gap in our understanding of the work of healthcare ethics consultants.     

Scanning the body,sequencing the genome: Dealing with unsolicited findings

The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between “scanning the body” and “sequencing the genome” from an ethical perspective. After briefly describing the novel diagnostic contexts leading to unsolicited findings, we synthesize and reflect on six core ethical issues that relate to both specialties: terminology; benefits and risks; autonomy; disclosure of unsolicited findings to children; uncertainty; and filters and routine screening. We identify ethical rationales that pertain to both fields and may contribute to more ethically sound policies. Considerations of preserving public trust and ensuring that people perceive healthcare policies as fair also support the need for a combined debate.     

Mapping out structural features in clinical care calling for ethical sensitivity: a theoretical approach to promote ethical competence in healthcare personnel and clinical ethical support services (CESS)

Clinical ethical support services (CESS) represent a multifaceted field of aims, consultancy models, and methodologies. Nevertheless, the overall aim of CESS can be summed up as contributing to healthcare of high ethical standards by improving ethically competent decision-making in clinical healthcare. In order to support clinical care adequately, CESS must pay systematic attention to all real-life ethical issues, including those which do not fall within the 'favourite' ethical issues of the day. In this paper we attempt to capture a comprehensive overview of categories of ethical tensions in clinical care. We present an analytical exposition of ethical structural features in judgement-based clinical care predicated on the assumption of the moral equality of human beings and the assessment of where healthcare contexts pose a challenge to achieving moral equality. The account and the emerging overview is worked out so that it can be easily contextualized with regards to national healthcare systems and specific branches of healthcare, as well as local healthcare institutions. By considering how the account and the overview can be applied to i) improve the ethical competence of healthcare personnel and consultants by broadening their sensitivity to ethical tensions, ii) identify neglected areas for ethical research, and iii) clarify the ethical responsibility of healthcare institutions' leadership, as well as specifying required institutionalized administration, we conclude that the proposed account should be considered useful for CESS.     

Healthcare professionals as gatekeepers in research involving refugee survivors of sexual torture: An examination of the ethical issues

This paper examines the ethical issues that arise when healthcare providers act as gatekeepers to research involving vulnerable populations. Traumatised refugees serve as an example of this subset of research participants. Highlighting the particular vulnerabilities of this group, we argue that specific ethical considerations are required that go beyond the conventional research approaches. While gatekeeping responds to some of those vulnerabilities, it risks wronging through unwarranted paternalism. Instead, we will propose that a relational ethics of justice and care serves as a more appropriate framework for responding to the challenges of research involving traumatised refugees. Specifically, such a framework allows us to reflect more deeply on the role of the gatekeeper. In conclusion, we recommend that clinicians and researchers collaborate with survivors’ advisory groups in the development of specific research ethical guidelines.     

Developing Ethical Awareness in Global Health: Four Cases for Medical Educators

In recent years, the growth of interest in global health among medical students and residents has led to an abundance of short‐term training opportunities in low‐resource environments. Given the disparities in resources, needs and expectations between visitors and their hosts, these experiences can raise complex ethical concerns. Recent calls for best practices and ethical guidelines indicate a need for the development of ethical awareness among medical trainees, their sponsoring and host institutions, and supervising faculty. As a teaching tool to promote this awareness, we developed a scenario that captures many common ethical issues from four different perspectives. Each perspective is presented in case format followed by questions. Taken together, the four cases may be used to identify many of the elements of a well‐designed global health training experience.     

Justice and Surgical Innovation: The Case of Robotic Prostatectomy

Surgical innovation promises improvements in healthcare, but it also raises ethical issues including risks of harm to patients, conflicts of interest and increased injustice in access to health care. In this article, we focus on risks of injustice, and use a case study of robotic prostatectomy to identify features of surgical innovation that risk introducing or exacerbating injustices. Interpreting justice as encompassing matters of both efficiency and equity, we first examine questions relating to government decisions about whether to publicly fund access to innovative treatments. Here the case of robotic prostatectomy exemplifies the difficulty of accommodating healthcare priorities such as improving the health of marginalized groups. It also illustrates challenges with estimating the likely long‐term costs and benefits of a new intervention, the difficulty of comparing outcomes of an innovative treatment to those of established treatments, and the further complexity associated with patient and surgeon preferences. Once the decision has been made to fund a new procedure, separate issues of justice arise at the level of providing care to individual patients. Here, the case of robotic prostatectomy exemplifies how features of surgical innovation, such as surgeon learning curves and the need for an adequate volume of cases at a treatment centre, can exacerbate injustices associated with treatment cost and the logistics of travelling for treatment. Drawing on our analysis, we conclude by making a number of recommendations for the just introduction of surgical innovations.     

Zika,contraception and the non‐identity problem

The 2016 outbreak of the Zika arbovirus was associated with large numbers of cases of the newly‐recognised Congenital Zika Syndrome (CZS). This novel teratogenic epidemic raises significant ethical and practical issues. Many of these arise from strategies used to avoid cases of CZS, with contraception in particular being one proposed strategy that is atypical in epidemic control. Using contraception to reduce the burden of CZS has an ethical complication: interventions that impact the timing of conception alter which people will exist in the future. This so‐called ‘non‐identity problem’ potentially has significant social justice implications for evaluating contraception, that may affect our prioritisation of interventions to tackle Zika. This paper combines ethical analysis of the non‐identity problem with empirical data from a novel survey about the general public's moral intuitions. The ethical analysis examines different perspectives on the non‐identity problem, and their implications for using contraception in response to Zika. The empirical section reports the results of an online survey of 93 members of the US general public exploring their intuitions about the non‐identity problem in the context of the Zika epidemic. Respondents indicated a general preference for a person‐affecting intervention (mosquito control) over an impersonal intervention (contraception). However, their responses did not appear to be strongly influenced by the non‐identity problem. Despite its potential philosophical significance, we conclude from both theoretical considerations and analysis of the attitudes of the community that the non‐identity problem should not affect how we prioritise contraception relative to other interventions to avoid CZS.     

The ethical landscape of gene drive research

Gene drive technology has immense potential. The ability to bypass the laws of Mendelian inheritance and almost ensure the transmission of specific genetic material to future generations creates boundless possibilities. But alongside these boundless possibilities are major social and ethical issues. This article aims to introduce gene drive technology, some of its potential applications, and some of the social and ethical issues that arise during research into the technology. For example, is investigation into gene drives hubristic? Would applications of gene drives count as technological fixes? Or does research into such a technology sit on a slippery slope or lock us in to its full‐scale use? Are there perverse effects of engaging in research, and, most importantly, who ought to be included in the decision‐making process regarding research and field trials? Understanding the basic ethical landscape of this technology will prove invaluable to the public, scientists, and policy‐makers as research moves forward.     

Video‐recording complex health interactions in a diverse setting: Ethical dilemmas,reflections and recommendations

Video‐recording healthcare interactions provides important opportunities for research and service improvement. However, this method brings about tensions, especially when recording sensitive topics. Subsequent reflection may compel the researcher to engage in ethical and moral deliberations. This paper presents experiences from a South African genetic counselling study which made use of video‐recordings to understand communicative processes in routine practice. Video‐recording as a research method, as well as contextual and process considerations are discussed, such as researching one's own field, issues of trust and anonymity, the challenge of providing true informed consent and capturing details which may cause psychological harm. Several recommendations for research practice in diverse healthcare settings are made. This includes the value of reflective pieces, the importance of retrospective consent, disclosure of the limitations to anonymity, as well as the collective responsibility of those involved to produce ethical research. These recommendations have value for genetic counselling and other healthcare fields.     

REEXAMINATION OF THE ETHICS OF PLACEBO USE IN CLINICAL PRACTICE

A placebo is a substance or intervention believed to be inactive, but is administered by the healthcare professional as if it was an active medication. Unlike standard treatments, clinical use of placebo usually involves deception and is therefore ethically problematic. Our attitudes toward the clinical use of placebo, which inevitably includes deception or withholding information, have a tremendous effect on our practice regarding truth‐telling and informed consent. A casual attitude towards it weakens the current practice based on shared decision‐making and mutual trust between patients and healthcare professionals. Issues concerning the clinical use of placebo are thus intimately related to patient‐provider relationships, the public's trust in medicine, and medical education. A review of recent survey studies suggests that the clinical use of placebo appears to be fairly well accepted among healthcare professionals and is common in clinical settings in various countries. However, we think that an ethical discussion is urgently needed because of its controversial nature. If judged to be ethically wrong, the practice should end. In the present paper, we discuss the ethicality of the clinical use of placebo with deception and argue against it, concluding that it is unethical and should be banned. We will show that most arguments in favor of the clinical use of placebo can be refuted and are therefore incorrect or weak. These arguments will be presented and examined individually. Finally, we will briefly consider issues relevant to the clinical use of placebo without deception.     

Evidence and ethics in medicine

Ethics and epistemology in medicine are more closely and more interestingly intertwined than is usually recognized. To explore this relationship, I present a case study, clinical trials of extracorporeal membrane oxygenation (ECMO; an intervention for persistent pulmonary hypertension of the newborn).Three separate ethical issues that arise from this case study-whether or not it is ethical to perform a certain trial at all, whether stopping rules for trials are ethically mandated, and the issue of informed consent-are all shown to be intimately related to epistemological judgments about the weight of evidence. Although ethical issues cannot, of course, be resolved by consideration of epistemological findings, I argue that no informed view of the ethical issues that are raised can be adopted without first taking an informed view of the evidential-epistemological ones.     

Ethics and cultural diversity--a framework for decision-making

Believing that healthcare outcomes will be more satisfying if the patients' cultural knowledge and values are understood and integrated appropriately in care planning, the author proposes a culturally competent ethical decision making model based on human rights--the fundamental right of individuals, families, groups, and populations to healthcare that is meaningful, supportive, and beneficial--and a reconceptualization of ethical principles to include the values and assumptions of clients. The ideal result is culturally congruent healthcare in which practitioners learn about their clients' lifeways and work with them to find satisfying ways to resolve clinical and ethical issues.     

International service learning programs: ethical issues and recommendations

Inequities in global health are increasingly of interest to health care providers in developed countries. In response, many academic healthcare programs have begun to offer international service learning programs. Participants in these programs are motivated by ethical principles, but this type of work presents significant ethical challenges, and no formalized ethical guidelines for these activities exist. In this paper the ethical issues presented by international service learning programs are described and recommendations are made for how academic healthcare programs can carry out international service learning programs in a way that minimizes ethical conflicts and maximizes benefits for all stakeholders. Issues related to project sustainability and community involvement are emphasized.     

Equity Under the Knife: Justice and Evidence in Surgery

Surgery is an increasingly common and expensive mode of medical intervention. The ethical dimensions of the surgeon‐patient relationship, including respect for personal autonomy and informed consent, are much discussed; but broader equity issues have not received the same attention. This paper extends the understanding of surgical ethics by considering the nature of evidence in surgery and its relationship to a just provision of healthcare for individuals and their populations.     

Bioethics and practical justice in the post‐COVID‐19 era

The ethical concept of justice, as it relates to the development and deployment of innovative health technologies, commands the fair and equitable distribution of burdens and benefits. In bioethics, specific guidance on practical strategies for achieving what this concept of justice demands are somewhat elusive. Drawing on issues of justice arising or likely to arise in the context of the search for a vaccine or cure for COVID‐19, this paper argues for a focus on the concept of “practical justice” in post‐pandemic bioethics work. To illustrate the value and promise of this concept, the paper reflects on an approach to achieving practical justice in health biotechnology research that is grounded in a commitment to offer technical assistance to developing and under‐resourced nations.     

The Ethical Imperative to Move to a Seven-Day Care Model

Whilst the nature of human illness is not determined by time of day or day of week, we currently structure health service delivery around a five-day delivery model. At least one country is endeavouring to develop a systems-based approach to planning a transition from five- to seven-day healthcare delivery models, and some services are independently instituting program reorganization to achieve these ends as research, amongst other things, highlights increased mortality and morbidity for weekend and after-hours admissions to hospitals. In this article, we argue that this issue does not merely raise instrumental concerns but also opens up a normative ethical dimension, recognizing that clinical ethical dilemmas are impacted on and created by systems of care. Using health policy ethics, we critically examine whether our health services, as currently structured, are at odds with ethical obligations for patient care and broader collective goals associated with the provision of publicly funded health services. We conclude by arguing that a critical health policy ethics perspective applying relevant ethical values and principles needs to be included when considering whether and how to transition from five-day to seven-day models for health delivery.     

Genome editing with the CRISPR‐Cas system: an art,ethics and global regulatory perspective

Over the last three decades, the development of new genome editing techniques, such as ODM, TALENs, ZFNs and the CRISPR‐Cas system, has led to significant progress in the field of plant and animal breeding. The CRISPR‐Cas system is the most versatile genome editing tool discovered in the history of molecular biology because it can be used to alter diverse genomes (e.g. genomes from both plants and animals) including human genomes with unprecedented ease, accuracy and high efficiency. The recent development and scope of CRISPR‐Cas system have raised new regulatory challenges around the world due to moral, ethical, safety and technical concerns associated with its applications in pre‐clinical and clinical research, biomedicine and agriculture. Here, we review the art, applications and potential risks of CRISPR‐Cas system in genome editing. We also highlight the patent and ethical issues of this technology along with regulatory frameworks established by various nations to regulate CRISPR‐Cas‐modified organisms/products.     

THE ETHICS OF INTERCOUNTRY ADOPTION: WHY IT MATTERS TO HEALTHCARE PROVIDERS AND BIOETHICISTS

The goal of this paper is both modest and ambitious. The modest goal is to show that intercountry adoption should be considered by ethicists and healthcare providers. The more ambitious goal is to introduce the many ethical issues that intercountry adoption raises. Intercountry adoption is an alternative to medical, assisted reproduction option such as in vitro fertilization (IVF), intracytoplasmic sperm injection, third party egg and sperm donation and surrogacy. Health care providers working with assisted reproduction are in a unique position to introduce their clients to intercountry adoption; however, providers should only do so if intercountry adoption is ethically equal or superior to the alternatives. This paper first presents a brief history of intercountry adoption. The second section compares intercountry adoption with medical alternatives. The third section examines the unique ethical challenges that are not shared by other medical alternatives. The final section concludes that it is simplistic for a healthcare provider to promote intercountry adoption unconditionally; however, in situation where intercountry adoption is practiced conscientiously it poses no greater ethical concern than several medical alternatives. This conclusion is preliminary and is intended as a start for further discussion.