Distinct Ethical Issues Research Articles

The Ethics of Acting Covertly

A covert action is an operation in which State A intends to influence events in State B without acknowledging that it is responsible for doing so. As the U.S. covert action statute defines it, covert action is “an activity or activities of the United States Government to influence political, economic, or military conditions abroad, where it is intended that the role of the United States Government will not be apparent or acknowledged publicly.” Thus, State A in the example above either will deny responsibility for the operation or, more often, simply remain silent in the face of claims that it is responsible. Types of covert operations have been the focus of several ethical analyses that address whether and how they may be justified. Is there, however, another level of potential ethical concern about a covert operation apart from its substantive character? Does acting covertly rather than overtly in itself raise distinctive ethical issues? Who, if anyone, has a right to know the identity of a state that has engaged in an activity?

The Ethical Issues of School-Based Occupational Therapy Practice in Quebec-Canada

ABSTRACT In Quebec-Canada, school-based occupational therapy has expanded over the last decade. This emerging practice context poses distinctive ethical issues for occupational therapists, but no empirical studies have documented them. Therefore, the purpose of this study was to describe the ethical issues faced by school-based occupational therapists in Quebec. Using a qualitative inductive research design, 19 school-based occupational therapists practicing in Quebec were interviewed individually. All participants reported experiencing ethical issues in their practice. Nine categories emerged from the analyzed data, covering ethical issues in the micro-environment (n = 4), meso-environment (n = 3), and macro-environment (n = 2). In the micro-environment, occupational therapists face ethical issues relating to collaboration with school teams, management of restraints and seclusion, compliance with practice standards, and accessibility of services. In the meso-environment, they experience ethical issues linked to the cultural clash between healthcare and education, the inclusion of students with disabilities in schools, and the lack of understanding and recognition of occupational therapy. In the macro-environment, they encounter ethical issues arising from the lack of resources, and the lack of intersectoral collaboration between healthcare and education systems. Describing the ethical issues of occupational therapy school-based practice is a first step toward identifying ways of preventing and resolving them.

Understanding the Ethical Issues of Brain-Computer Interfaces (BCIs): A Blessing or the Beginning of a Dystopian Future?

In recent years, scientific discoveries in the field of neuroscience combined with developments in the field of artificial intelligence have led to the development of a range of neurotechnologies. Advances in neuroimaging systems, neurostimulators, and brain-computer interfaces (BCIs)are leading to new ways of enhancing, controlling, and "reading" the brain. In addition, although BCIs were developed and used primarily in the medical field, they are now increasingly applied in other fields (entertainment, marketing, education, defense industry). We conducted a literature review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines to provide background information about ethical issues related to the use of BCIs. Among the ethical issues that emerged from the thematic data analysis of the reviewed studies included questions revolving around human dignity, personhood and autonomy, user safety, stigma and discrimination, privacy and security, responsibility, research ethics, and social justice (including access to this technology). This paper attempts to address the various aspects of these concerns. A variety of distinct ethical issues were identified, which, for the most part, were in line with the findings of prior research. However, we identified two nuances, which are related to the empirical research on ethical issues related to BCIs and the impact of BCIs on international relationships. The paper also highlights the need for the cooperation of all stakeholders to ensure the ethical development and use of this technology and concludes with several recommendations. The principles of bioethics provide an initial guiding framework, which, however, should be revised in the current artificial intelligence landscape so as to be responsive to challenges posed by the development and use of BCIs.

Introduction: The Journal of Clinical Ethics, the MacLean Center, and the Future of Clinical Ethics.

Introduction: The Journal of Clinical Ethics, the MacLean Center, and the Future of Clinical Ethics.

Addressing Shortcomings in Contingency Standards of Care

Addressing Shortcomings in Contingency Standards of Care

Participatory Design of Affective Technology: Interfacing Biomusic and Autism

The benefits of user-centered and participatory design have been widely acknowledged for the development of technologies that are likely to be appropriated by the product’s stakeholders. While participatory design has been applied to some affective technologies, the technical and algorithmic complexity of those based on semi-intelligent information filters (SIIFs) pose distinct challenges. Coincidentally, these technologies raise important and distinct ethical issues that make stakeholder input critical during product design. We present a framework for fostering genuine engagement from stakeholders through the case example of biomusic - a SIIF-based affective technology that translates emotion-related physiological changes into sound. During a 3-day workshop, ethnographic methods were used to collect data about the interface between biomusic and individuals on the autism spectrum. From these data, emergent themes, such as such as privacy, data security, conceptions of assistive technology and representation of emotions were analyzed using a grounded theory approach. In order to illuminate distinct design decisions implicated by these complex and interwoven ethical issues, we propose a design framework consisting of a technological, a human-centered and an ecological lens. This framework and recommendations provide a concrete praxis for engaging stakeholders in the complex issues associated with the design of SIIF-based emotion-oriented systems.

Integrating Public Participation, Transparency and Accountability Into Governance of Marketing Authorisation for Genome Editing Products

Public participation, transparency and accountability are three of the pillars of good governance. These pillars become particularly important for innovative, personalised health technologies, because of the tendency of these technologies to raise distinct scientific, ethical, legal and social issues. Genome editing is perhaps the most personal of all innovative health technologies, involving precise modifications to an individual’s genome. This article focuses on the adequacy of current requirements for public participation, transparency and accountability in the governance of the market authorisation for genome edited products. Although clinical trials for genome edited products are only just underway, lessons can be drawn from the marketing approvals pathways for related gene therapy products. This article provides a broad overview of the regulatory pathways that have been adopted by the US Food and Drugs Administration, the European Medicines Authority, and the Australian Therapeutic Goods Administration for reviewing gene therapy products for marketing approval. This analysis focuses on the extent to which public participation processes and transparency and accountability of review pathways are incorporated into marketing approval policy and practice. Following this review, the article proposes the application of Sheila Jasanoff’s “technologies of humility” as a foundation for meaningfully incorporating these pillars of good governance into regulatory processes for the review of products of genome editing. We conclude by articulating clear mechanisms for operationalising technologies of humility in the context of public participation, transparency and accountability, providing a blueprint for future policy development.

Making sense of heritable human genome editing: Scientific and ethical considerations.

Genome editing, particularly the use of CRISPR-Cas9-based methodologies, is revolutionizing biology through its impacts on research and the translation of these into applications in biomedicine. Somatic genome editing aimed at treating individuals with disease raises some significant ethical issues, but proposed heritable interventions, through the use of genome editing in gametes or embryos, raise a number of distinct social, ethical and political issues. This review will consider some proposed uses of heritable human genome editing (HHGE) and several of the objections to these that have been raised. Making sense of such proposed uses requires viewing HHGE as an assisted reproductive technology (ART) that, like preimplantation genetic testing (PGT) and mitochondrial replacement techniques (MRT), aims to prevent disease transmission during sexual reproduction, rather than acting as a therapy for an existing individual. Applications beyond the paradigm of disease prevention raise even more difficult scientific and ethical questions. Here, I will discuss various themes that are prominent in discussions of the science and ethics of HHGE, including impacts on human dignity and society, the language of HHGE used for public dialogue and the governance of HHGE.

Pain, placebo, and cognitive penetration

There is compelling evidence that pain experience is influenced by cognitive states. We explore one specific form of such influence, namely placebo analgesia, and examine its relevance for the cognitive penetration debate in philosophy of mind. We single out as important a form of influence on experience that we termradical cognitive penetration,and argue that some cases of placebo analgesia constitute compelling instances of this phenomenon. Still, we urge caution in extrapolating from this to broader conclusions about cognitive penetration in perceptual experience. Instead, we suggest that the cognitive penetration of pain raises distinctive psychological, epistemological, and ethical issues.

The Belmont Report and Innovative Practice.

One of the Belmont Report's most important contributions was the clear and serviceable distinction it drew between standard medical practice and biomedical research. A less well-known achievement of the Report was its conceptualization of innovative practice, a type of medical practice that is often mistaken for research because it is new, untested, or experimental. Although the discussion of innovative practice in Belmont is brief and somewhat cryptic, this does not reflect the significant progress its authors made in understanding innovative practice and the distinctive ethical issues it raises. This article explores the history and broader context of Belmont's conception of innovative practice, its strengths and weaknesses, and its contemporary relevance for scholars working in bioethics and health policy. While this conception of innovative practice deserves our attention, it is inherently limited in some important ways.

International Clinical Research and Justice in the Belmont Report.

The Belmont Report was written by a US Commission charged by the US Congress to advise on research supported by the US government. Its focus was understandably domestic. In the 40 years since its publication, clinical research has become increasingly international. Many clinical trials have sites in multiple countries, and many of the host countries are relatively impoverished. Such research raises some distinctive ethical issues. This paper outlines some of the key ethical challenges that have been raised by clinical research conducted in low- and middle-income countries (LMICs) and sponsored by high-income country (HIC) institutions. It then considers whether the Belmont Report has the resources to address these problems and argues that it does not. The article closes by noting some parallels between this international research and domestic US research, which suggest that the US might benefit from the discussions abroad.

Ethical issues associated with HIV molecular epidemiology: a qualitative exploratory study using inductive analytic approaches

BackgroundHIV molecular epidemiology is increasingly recognized as a vital source of information for understanding HIV transmission dynamics. Despite extensive use of these data-intensive techniques in both research and public health settings, the ethical issues associated with this science have received minimal attention. As the discipline evolves, there is reasonable concern that existing ethical and legal frameworks and standards might lag behind the rapid methodological developments in this field. This is a follow-up on our earlier work that applied a predetermined analytical framework to examine the perspectives of a sample of scientists from the fields of epidemiology, public health, virology and bioethics on key ethical issues associated with HIV molecular epidemiology in HIV network research.MethodsFourteen in-depth interviews were conducted with scientists from the fields of molecular epidemiology, public health, virology and bioethics. Inductive analytical approaches were applied to identify key themes that emerged from the data.ResultsOur interviewees acknowledged the potential positive impact of molecular epidemiology in the fight against HIV. However, they were concerned that HIV phylogenetics research messages may be incorrectly interpreted if not presented at the appropriate level. There was consensus that HIV phylogenetics research presents a potential risk to privacy, but the probability and magnitude of this risk was less obvious. Although participants acknowledged the social value that could be realized from the analysis of HIV genetic sequences, there was a perceived fear that the boundaries for use of HIV sequence data were not clearly defined.Conclusions Our findings highlight distinct ethical issues arising from HIV molecular epidemiology. As the discipline evolves and HIV sequence data become increasingly available, it is critical to ensure that ethical standards keep pace with biomedical advancements. We argue that the ethical issues raised in this study, whether real or perceived, require further conceptual and empirical examination.

The development of ethical guidelines for telemedicine in South Africa

Telemedicine has the potential to assist in the provision of healthcare in South Africa (SA). This means of healthcare service provision involves patients, doctors and machines working together, with few constraints imposed by geography, or national or institutional boundaries. Although the practice is largely beneficial, certain legal and ethical challenges arise from the use of electronic healthcare services. Certain ethical challenges are identified as: the changing nature of the traditional doctor-patient relationship; standards of care; quality of care; privacy; confidentiality; data protection; accountability; liability; consent; record-keeping; data storage; and authentication. While various legal, regulatory and governance measures offer potential solutions and remedies for protection, ethical direction may be achieved through statutory bodies set up to promote and foster ethical compliance with normative healthcare standards. Recently, the Health Professions Council of SA (HPCSA) made an attempt to address the ethical issues by publishing a set of telemedicine guidelines. Despite this, issues around the practice of telemedicine remain unresolved. This article seeks to inform the development of a new ethical framework by addressing three distinct and relevant ethical issues: the fiduciary nature of healthcare and the changing nature of the doctor-patient relationship; privacy, confidentiality and the sensitivity of health data; and informed consent. It does so by proposing a broader and more nuanced solution to these ethical obstacles by identifying conceptual and operational difficulties within the existing HPCSA telemedicine guidelines, and advancing suggestions for reform. This speaks to a more highly integrated perspective that is culturally and contextually aware, and which affirms the need to strike a balance between individual rights protection and transformative, ethical, healthcare innovation.

임신중절에 관한 드워킨의 가치 논변 연구*,**

Abortion raises two distinct but related ethical issues: one concerns the moral status of a fetus; the other concerns the conflict between the rights of a fetus and those of a pregnant woman. While conservatives claim that a fetus has a right to life, which outweighs a woman’s right to bodily autonomy, liberals who support abortion rights focus rather on the meaning of pregnancy for women. Dworkin argues against both the liberal and the conservative views, claiming that each is inconsistent with our considered moral judgements. He claims that a fetus has, not rights, but rather intrinsic value, and different views on the intrinsic value of fetal life give rise to different views on the morality of abortion. This argument from Dworkin, which I call the “value-argument,” is critically examined in this essay. While the value-argument helps to explain our considered moral judgements concerning abortion and integrates the two aforementioned problems into one, the “intrinsic value problem,” it fails to resolve the ethical problem of abortion. Rather than justifying its central claim that a fetus has some intrinsic value, Dworkin presupposes it as a working hypothesis. Nor does he provide objective criteria for evaluating the intrinsic value of a fetus. As such, Dworkin does not present a unique position on the ethics of abortion but rather explains why differences of opinion concerning abortion arise. This critical examination of the value-argument concludes that rather than solving the moral problem of abortion Dworkin merely provides an analysis of it.

The spectrum of ethical issues in a Learning Health Care System: a systematic qualitative review.

To determine systematically the spectrum of ethical issues that is raised for stakeholders in a 'Learning Health Care System' (LHCS). The systematic review was conducted in PubMed and Google Books between the years 2007 and 2015. The literature search retrieved 1258 publications. Each publication was independently screened by two reviewers for eligibility for inclusion. Ethical issues were defined as arising when a relevant normative principle is not adequately considered or two principles come into conflict. A total of 65 publications were included in the final analysis and were analysed using an adapted version of qualitative content analysis. A coding frame was developed inductively from the data, only the highest-level categories were generated deductively for a life-cycle perspective. A total of 67 distinct ethical issues could be categorized under different phases of the LHCS life-cycle. An overarching theme that was repeatedly raised was the conflict between the current regulatory system and learning health care. The implementation of a LHCS can help realize the ethical imperative to continuously improve the quality of health care. However, the implementation of a LHCS can also raise a number of important ethical issues itself. This review highlights the importance for health care leaders and policy makers to balance the need to protect and respect individual participants involved in learning health care activities with the social value of improving health care.

Ethical issues in public health surveillance: a systematic qualitative review

BackgroundPublic health surveillance is not ethically neutral and yet, ethics guidance and training for surveillance programmes is sparse. Development of ethics guidance should be based on comprehensive and transparently derived overviews of ethical issues and arguments. However, existing overviews on surveillance ethics are limited in scope and in how transparently they derived their results. Our objective was accordingly to provide an overview of ethical issues in public health surveillance; in addition, to list the arguments put forward with regards to arguably the most contested issue in surveillance, that is whether to obtain informed consent.MethodsEthical issues were defined based on principlism. We assumed an ethical issue to arise in surveillance when a relevant normative principle is not adequately considered or two principles come into conflict. We searched Pubmed and Google Books for relevant publications. We analysed and synthesized the data using qualitative content analysis.ResultsOur search strategy retrieved 525 references of which 83 were included in the analysis. We identified 86 distinct ethical issues arising in the different phases of the surveillance life-cycle. We further identified 20 distinct conditions that make it more or less justifiable to forego informed consent procedures.ConclusionsThis is the first systematic qualitative review of ethical issues in public health surveillance resulting in a comprehensive ethics matrix that can inform guidelines, reports, strategy papers, and educational material and raise awareness among practitioners.

Ethical aspects of malaria control and research.

Malaria currently causes more harm to human beings than any other parasitic disease, and disproportionally affects low-income populations. The ethical issues raised by efforts to control or eliminate malaria have received little explicit analysis, in comparison with other major diseases of poverty. While some ethical issues associated with malaria are similar to those that have been the subject of debate in the context of other infectious diseases, malaria also raises distinct ethical issues in virtue of its unique history, epidemiology, and biology. This paper provides preliminary ethical analyses of the especially salient issues of: (i) global health justice, (ii) universal access to malaria control initiatives, (iii) multidrug resistance, including artemisinin-based combination therapy (ACT) resistance, (iv) mandatory screening, (v) mass drug administration, (vi) benefits and risks of primaquine, and (vii) malaria in the context of blood donation and transfusion. Several ethical issues are also raised by past, present and future malaria research initiatives, in particular: (i) controlled infection studies, (ii) human landing catches, (iii) transmission-blocking vaccines, and (iv) genetically-modified mosquitoes. This article maps the terrain of these major ethical issues surrounding malaria control and elimination. Its objective is to motivate further research and discussion of ethical issues associated with malaria—and to assist health workers, researchers, and policy makers in pursuit of ethically sound malaria control practice and policy.

A review of ethical issues in dementia

Dementia raises many ethical issues. The present review, taking note of the fact that the stages of dementia raise distinct ethical issues, focuses on three issues associated with stages of dementia's progression: (1) how the emergence of preclinical and asymptomatic but at-risk categories for dementia creates complex questions about preventive measures, risk disclosure, and protection from stigma and discrimination; (2) how despite efforts at dementia prevention, important research continues to investigate ways to alleviate clinical dementia's symptoms, and requires additional human subjects protections to ethically enroll persons with dementia; and (3) how in spite of research and prevention efforts, persons continue to need to live with dementia. This review highlights two major themes. First is how expanding the boundaries of dementias such as Alzheimer's to include asymptomatic but at-risk persons generate new ethical questions. One promising way to address these questions is to take an integrated approach to dementia ethics, which can include incorporating ethics-related data collection into the design of a dementia research study itself. Second is the interdisciplinary nature of ethical questions related to dementia, from health policy questions about insurance coverage for long-term care to political questions about voting, driving, and other civic rights and privileges to economic questions about balancing an employer's right to a safe and productive workforce with an employee's rights to avoid discrimination on the basis of their dementia risk. The review highlights these themes and emerging ethical issues in dementia.

Ethical issues raised by private practice physiotherapy are more diverse than first meets the eye: recommendations from a literature review.

Physiotherapy in private practice differs from physiotherapy practised in a public setting in several ways, the most evident of which is the for-profit nature of private physiotherapy clinics; these differences can generate distinct and challenging ethical issues. The objectives of this article are to identify ethical issues encountered by physiotherapists in private practice settings and to identify potential solutions and recommendations to address these issues. After a literature search of eight databases, 39 studies addressing ethical issues in a private practice context were analyzed. A total of 25 ethical issues emerging from the included studies were classified into three main categories: (1) business and economic issues (e.g., conflicts of interests, inequity in a managed care context, lack of time affecting quality of care); (2) professional issues (e.g., professional autonomy, clinical judgment, treatment effectiveness, professional conduct); and (3) patients' rights and welfare issues (e.g., confidentiality, power asymmetries, paternalism vs. patient autonomy, informed consent). Recommendations as to how physiotherapists could better manage these issues were then identified and categorized. The physiotherapy community should reflect on the challenges raised by private practice so that professionals can be supported-through education, research, and good governance-in providing the best possible care for their patients.

Is there a problem with the status quo? Debating the need for standalone ethical guidelines for research with people who use alcohol and other drugs

In 2011, the Australian National Health and Medical Research Council (NHMRC) initiated an inquiry to determine whether there is a need for expanded ethical guidance in the form of a discrete guidance document for alcohol and other drug (AOD) research. An issues paper was developed to frame the inquiry. AOD researchers, Human Research Ethics Committees and others were invited to discuss whether there are distinctive ethical issues facing researchers and Human Research Ethics Committees in the AOD setting. Based on the public submissions, the NHMRC recommended that no AOD research-specific guidance is required. The inquiry and the NHMRC decision were not widely publicized, and we feel there is a need for further discussion. In order to do so, we have analysed the public inquiry submissions and described the central themes. Few submissions in the inquiry explicitly agreed AOD research warrants a specific guidance framework. Most were concerned that the NHMRC issues paper unfairly targeted people who use drugs as complex research participants. The inquiry highlights tensions around research governance and ethics review boards dealing with illicit and stigmatised behaviours. While we agree that a specific guidance framework for AOD research is not needed and could potentially be harmful and restrictive, we are concerned that the wholesale rejection of a guidance framework has closed the door to much needed debate. There remains, we argue, a need for alternative strategies and tools to support ethical research, inform and streamline institutional ethics approval, and engage and protect participants.