Important Ethical Issues Research Articles

The Sociotechnical Ethics of Digital Health: A Critique and Extension of Approaches From Bioethics.

The widespread adoption of digital technologies raises important ethical issues in health care and public health. In our view, understanding these ethical issues demands a perspective that looks beyond the technology itself to include the sociotechnical system in which it is situated. In this sense, a sociotechnical system refers to the broader collection of material devices, interpersonal relationships, organizational policies, corporate contracts, and government regulations that shape the ways in which digital health technologies are adopted and used. Bioethical approaches to the assessment of digital health technologies are typically confined to ethical issues raised by features of the technology itself. We suggest that an ethical perspective confined to functions of the technology is insufficient to assess the broader impact of the adoption of technologies on the care environment and the broader health-related ecosystem of which it is a part. In this paper we review existing approaches to the bioethics of digital health, and draw on concepts from design ethics and science & technology studies (STS) to critique a narrow view of the bioethics of digital health. We then describe the sociotechnical system produced by digital health technologies when adopted in health care environments, and outline the various considerations that demand attention for a comprehensive ethical analysis of digital health technologies in this broad perspective. We conclude by outlining the importance of social justice for ethical analysis from a sociotechnical perspective.

Ethics, Data and Information in Genome Sequencing in Newborns

"One of the current debates in Genetics is the genomic sequencing in newborns. Thanks to the genomic technologies, it is currently possible to detect diseases that a newborn may suffer in the short, medium or long term. Genomic tests pose some important ethical issues. Those issues can be classified in three different types: those regarding the object of the screening (genes that must be analyzed), those related to the information (how it must be managed) and those regarding justice questions (economic costs, population to be included in some screening programs). This study is based on a previous study whose aim was to present a general view of those three ethical problems. This study aims to focus on one of these three problems: the information. We think that how to manage the information on the results of a genomic sequencing in newborns is perhaps the most important ethical issue in this topic. Hence this work aims to address these questions regarding information on genomic sequencing: How the genomic screening has to be explained to the parents in order to get the informed consent? Should the physician give them all the data or only the information related to some genes about which he is sure that they will cause a disease? How the genomic information has to be managed? Can we keep this information once we have finished the screening of a newborn? Should we destroy it after the screening? Is it ethical that parents, without a prescription or medical control, can do on their own a genomic screening on their newborn child? "

Informed Consent in Dentistry – When, Why and How

"For dentists, as well as for other health care practitioners, it is mandatory to obtain informed consent from their patients, implying that a dialog has taken place and that patients understand the risks, benefits and alternatives to rendered treatments. Having in mind that majority of dental procedures are surgical in nature, leading to irreversible change to orofacial tissues and with the risk of unwanted side effects, well-documented informed consent process needs to be a basic norm in the dental practice. Clinical experience suggests that verbal discussion along with providing informed consent forms may not be enough and that patients response and understanding may improve by adding adjunctive materials like brochures or videos related to planned procedures. Many companies for implants and dental materials supply dental offices with the brochures and pamphlets, mostly for marketing purposes. Therefore, the use of these materials must be used with caution while objectively discussing other reasonable options. With the increasingly growing phenomenon of dental tourism, an important dentist-patient relationship ethical issues arise. Namely, issues regarding patient autonomy over practitioner choice, patient safety, and optimal care are under constant reconsideration while informed consent has to specify circumstances underlying treatment plan and posttreatment care. Currently, there is a paucity of information regarding informed consent in dentistry, and vital ethical issues associated with recent developments in dental practice need to be addressed in the near future. "

Optimal COVID-19 Vaccine Sharing Between Two Nations That Also Have Extensive Travel Exchanges.

Countries around the world have observed reduced infections from the SARS-CoV-2 virus, that causes COVID-19 illness, primarily due to non-pharmaceutical interventions (NPIs) such as lockdowns and social distancing measures designed to limit physical proximity between people. However, economies and societal interactions require restarting, and so lockdowns cannot continue indefinitely. Therefore, much hope is placed in using newly developed vaccines as a route back to normality, but this raises key questions about how they are shared. There are also emerging questions regarding travel. For instance, international business and trade necessitates at least some in-person exchanges, alongside restarting travel also for tourist purposes. By utilising a Susceptible-Infected-Recovered-Vaccinated (SIRV) mathematical model, we simulate the populations of two nations in parallel, where the first nation produces a vaccine and decides the extent to which it is shared with the second. Overlaying our mathematical structure is the virus-related effects of travel between the two nations. We find that even with extensive travel, nation one minimises its total number of deaths by simply retaining vaccines, aiming for full inoculation as fast as possible, suggesting that the risks posed by travel can be mitigated by rapidly vaccinating its own population. If instead we consider the total deaths i.e., sum of deaths of both nations, then such a policy of not sharing by nation one until full vaccination is highly sub-optimal. A policy of low initial sharing causes many more deaths in nation two than lives saved in nation one, raising important ethical issues. This imbalance in the health impact of vaccination provision must be considered as some countries begin to approach the point of extensive vaccination, while others lack the resources to do so.

Patients' perspectives on the derivation and use of organoids.

SummaryOrganoid research is enhancing understanding of human development and diseases as well as aiding in medication development and selection, raising hopes for even more future therapeutic options. Nevertheless, this work raises important ethical issues and there is a paucity of data regarding patients' perspectives on them. We report on 60 interviews with adult patients or parents of pediatric patients from diverse disease populations who receive medical care at a major academic research institution in the United States. Interviewees expressed broad support for organoid development and use. However, patients viewed brain organoids, and sometimes gonadal organoids, as morally distinct; and some organoid research poses moral concerns. Nonetheless, patients generally understood the potential value of such research and approved of it, provided it was aimed at good intent and conducted with ethical oversight and a robust consent process. These data should help inform conceptual and policy deliberations about appropriate organoid use.

Understanding the benefits and burdens associated with a malaria human infection study in Kenya: experiences of study volunteers and other stakeholders

BackgroundHuman infection studies (HIS) that involve deliberately infecting healthy volunteers with a pathogen raise important ethical issues, including the need to ensure that benefits and burdens are understood and appropriately accounted for. Building on earlier work, we embedded social science research within an ongoing malaria human infection study in coastal Kenya to understand the study benefits and burdens experienced by study stakeholders in this low-resource setting and assess the wider implications for future research planning and policy.MethodsData were collected using qualitative research methods, including in-depth interviews (44), focus group discussions (10) and non-participation observation. Study participants were purposively selected (key informant or maximal diversity sampling), including volunteers in the human infection study, study staff, community representatives and local administrative authorities. Data were collected during and up to 18 months following study residency, from sites in Coastal and Western Kenya. Voice recordings of interviews and discussions were transcribed, translated, and analysed using framework analysis, combining data- and theory-driven perspectives.FindingsPhysical, psychological, economic and social forms of benefits and burdens were experienced across study stages. Important benefits for volunteers included the study compensation, access to health checks, good residential living conditions, new learning opportunities, developing friendships and satisfaction at contributing towards a new malaria vaccine. Burdens primarily affected study volunteers, including experiences of discomfort and ill health; fear and anxiety around aspects of the trial process, particularly deliberate infection and the implications of prolonged residency; anxieties about early residency exit; and interpersonal conflict. These issues had important implications for volunteers’ families, study staff and the research institution’s reputation more widely.ConclusionDeveloping ethically and scientifically strong HIS relies on grounded accounts of volunteers, study staff and the wider community, understood in the socioeconomic, political and cultural context where studies are implemented. Recognition of the diverse, and sometimes perverse, nature of potential benefits and burdens in a given context, and who this might implicate, is critical to this process. Prior and ongoing stakeholder engagement is core to developing these insights.

Major lead exposure from hunting ammunition in eagles from Sweden

Exposure to lead (Pb) from ammunition in scavenging and raptorial birds has achieved worldwide recognition based on incidences of lethal poisoning, but exposure implies also sublethal levels with potential harmful effects. Background and elevated Pb levels in liver from 116 golden eagles (GE, Aquila chrysaetos) and 200 white-tailed sea eagles (WTSE, Haliaeetus albicilla) from Sweden 2003–2011 are here examined, with supporting data from a previous WTSE report and eagle owl (EO, Bubu bubo) report. GE and WTSE display seasonal patterns, with no Pb level exceeding a generally accepted threshold for subclinical effects during summer but strongly elevated levels from October. Fledged juveniles show significantly lower levels than all other age classes, but reach levels found in older birds in autumn after the start of hunting seasons. Pb levels in EO (non-scavenger) show no seasonal changes and indicate no influence from ammunition, and are close to levels observed in juvenile eagles before October. In all, 15% WTSE and 7% GE were lethally poisoned. In areas with high-exposure to hunting ammunition, 24% of WTSE showed lethal Pb levels, compared to 7% in both eagle species from low-exposure areas. Lethal poisoning of WTSE remained as frequent after (15%) as before (13%) a partial ban on use of Pb-based shotgun ammunition over shallow waters (2002). Pb levels increased significantly in WTSE 1981–2011, in contrast to other biota from the same period. A significant decrease of Pb in WTSE liver occurred below a threshold at 0.25 μg/g (dry weight), exceeded by 81% of the birds. Trend patterns in Pb isotope ratios lend further support to this estimated cut-off level for environmental background concentrations. Pb from spent ammunition affects a range of scavenging and predatory species. A shift to Pb-free ammunition to save wildlife from unnecessary harm is an important environmental and ethical issue.

Enrolling Children in Clinical Trials for Genetic Neurodevelopmental Conditions: Ethics, Parental Decisions, and Children's Identities.

Knowledge of genetic mechanisms contributing to neurodevelopmental conditions is advancing. This is informing development of new drugs to treat or ameliorate these conditions, through targeting underlying genetic pathways. Drugs are tested in clinical trials, necessitating parents to engage with decisions about whether to enroll their child. In this article, we consider important ethical issues to anticipate as clinical research opportunities in genetic neurodevelopmental conditions arise. For example, genetic pathways targeted by the drugs may interact with valued character and personality traits. It is essential that recruitment and consent processes are optimized for families who will grapple with whether these novel drug treatments interact with their child's personality and authentic identity. We call for focused social science research and further normative analysis so that parents are better supported to make informed choices. Additionally, clinical research regulators should have a sound understanding of the contextual experiences regarding how this population of parents engages with decisions.

Ethical issues in the access to emergency care for undocumented immigrants.

Patients who are undocumented immigrants (UIs) frequently present to emergency departments in the United States, especially in communities with large immigrant populations. Emergency physicians confront important ethical issues when providing care for these patients. This article examines those ethical issues and recommends best practices in emergency care for UIs. After a brief introduction and description of the UI population, the article proposes central principles of emergency medical ethics as a framework for emergency physician decisions and actions. It then considers the role of law and public policy in health care for UIs, including the Emergency Medical Treatment and Labor Act, the Patient Protection and Affordable Care Act, and current practices of the US Immigration and Customs Enforcement agency. The article concludes with discussion of the scope of emergency physician practice and with recommendations regarding best practices in ED care for UIs.

Exploring the phenomenon and ethical issues of AI paternalism in health apps.

Health apps, including consumer-oriented fitness apps, have two functions. They are supposed to monitor and promote users' health, the latter by way of being an instance of persuasive technology. The use of artificial intelligence (AI) allows for AI health apps, i.e., health apps that act more and more autonomously when it comes to analyzing users' health data and arriving at tailor-made results on how to improve their health. Consequently, AI health apps seem to gain a paternalistic potential. This is a game-changer, for corresponding issues of paternalism can then no longer be traced back to human engineers. Instead, the paternalizing party just is the AI system. Hence, AI health apps lead to the novel issue of AI paternalism in health care. In this paper, I explore this novel phenomenon and its ethical implications. Firstly, I discuss from a critical perspective whether the notion of AI paternalism makes (conceptual) sense to begin with. Unsurprisingly, I argue that it does and how so. Secondly, I briefly indicate important ethical issues that AI paternalism in health apps raise and which need to be discussed in more detail in order to judge under which conditions (certain forms of) AI paternalism might be considered acceptable, if at all.

Neuropsychological profile associated with an alpha-synuclein gene (SNCA) duplication

Objective: The alpha-synuclein gene (SNCA) is implicated in both Parkinson’s disease (PD) and dementia with Lewy bodies (DLB). The purpose of this case study was to describe the neuropsychological profile, clinical trajectory, and treatment course of an individual with a known SNCA gene duplication who was followed over the course of three years. Methods: The patient was a healthy man who developed olfactory changes in early adulthood followed by parkinsonism and cognitive concerns around age 40. He underwent serial neurologic and neuropsychological evaluations and neuroimaging, as well as genetic testing for PD gene mutations. He consented to share his medical information to increase awareness of his condition. Results: Initial neuropsychological evaluation (age 44) revealed mild cognitive impairment primarily affecting executive and frontal/subcortical functions. Follow-up evaluations showed rapid cognitive decline that far surpassed the patient’s Parkinsonism, which responded well to carbidopa-levodopa. As symptoms progressed, he also developed features characteristic of DLB, including cognitive fluctuations, rapid eye movement sleep behavior disorder, and visual hallucinations. Conclusion: SNCA gene duplication has classically been associated with a slowly progressive syndrome closely resembling idiopathic PD, but less frequently it can cause rapidly progressive dementia. This case study is the first to describe this rare phenotype in terms of its full neuropsychological profile and trajectory. The case highlights the value of a transdisciplinary evaluation and treatment and brings up important ethical and practical issues that should be considered when working with patients who have suspected or known genetic disorders.

Views on ethical issues in research labs: A university-wide survey

ABSTRACT In this article, we summarize the key findings of an exploratory study in which students and faculty completed a survey that sought to identify the most important ethical issues in STEM fields, how often these issues are discussed in research groups, and how often these ethical issues come up in the daily practice of research. Participants answered a series of open-ended and Likert-scale questions to provide a detailed look at the current ethical landscape at a private research university in the Midwest. The survey also looked at potential differences between faculty and undergraduate and graduate students’ perceptions in answering these questions. The results indicate that while all community members tended to view issues that can be classified as research misconduct as the most important activities to avoid in STEM-related research, the level of discussion and actual witnessing of these practices was relatively low. The study points to a consensus among students and faculty about the important ethical issues in STEM and the need for more discussion and attention to be paid to communication, collaboration, and interpersonal relationships in the research environment.

Advancing the ethical dialogue about monkey/human chimeric embryos

In this issue of Cell, Tan etal. report the first injection of human stem cells into invitro non-human primate blastocysts with significant survival of the human cells, raising new scientific possibilities but also important ethical issues.

Fermentation of Agri-Food Waste: A Promising Route for the Production of Aroma Compounds

Food waste and byproducts are generated along the entire food processing and storage chain. The large amount of waste deriving from the whole process represents not only a great economic loss but also an important ethical and environmental issue in terms of failure to recycle potentially reusable materials. New, clear strategies are needed to limit the amount of waste produced and, at the same time, promote its enhancement for further conversion and application to different industrial fields. This review gives an overview of the biological approaches used so far to exploit agri-food wastes and byproducts. The application of solid-state fermentation by different microorganisms (fungi, yeasts, bacteria) to produce several value-added products was analyzed, focusing on the exploitation of lactic acid bacteria as workhorses for the production of flavoring compounds.

Current ethical aspects of absolute uterine factor infertility treatment using uterus transplantation.

An analysis of ethical studies related to uterus transplantation in the treatment of absolute uterine factor infertility. Literary research using the Web of Science, Google Scholar and Pubmed databases with the following keywords: absolute uterine factor infertility, ethics, deceased donor, living donor, and uterus transplantation. An analysis of articles published in impact and reviewed journals between 2000-2021. Uterus transplantation is a promising treatment method for women with absolute uterine factor infertility. In the experimental studies, an ultimate goal of this complex treatment was repeatedly achieved: childbirth through a caesarean section. An important milestone towards the application of uterus transplantation in human was the Montreal criteria of its ethical feasibility, published in 2012-2013. In 2012, the first uterus transplant study from a living donor started in Sweden and, in 2016, further studies were initiated worldwide. The first childbirth from the transplanted uterus in 2014 increased the interest of ethicists in various aspects of this experimental treatment, and this trend continues. Current ethical analyzes are focused particularly on the comparison of advantages and disadvantages related to the utilization of living and deceased donors of uterus; comparing ethical aspects of gestational surrogacy and uterus transplantation; uterus transplantation as an extremely radical form of assisted reproduction; its impact on adoptions; uterus transplantation in trans-gender women; the importance of establishing an international registry for uterus transplants; and other important ethical issues associated with this complex form of assisted reproduction. Uterus transplantation is still in an experimental stage. The ethical analysis of the individual steps of this comprehensive method in the treatment of female infertility should be carried out continuously, in connection with the gradually presented outcomes of ongoing scientific research studies.

New placebo-controlled Covid-19 vaccine trials are ethically questionable; it's now about comparative effectiveness and availability of registered vaccines

Now that a number of vaccines against Covid-19 are approved by internationally authoritative regulators for use in a variety of target groups, an important ethical issue is whether investigators of new candidate vaccines should still assign participants to placebo groups, thereby withholding them the protection that already available vaccines can offer [1]. It could be argued that continuation of this research practice is warranted as long as there are insufficient vaccines for most people, including potential trial participants.

Triaging ethical issues in the coronavirus pandemic: how to prioritize bioethics research during public health emergencies.

Much of the ethical discourse concerning the coronavirus pandemic has focused on the allocation of scarce resources, be it potentially beneficial new treatments, ventilators, intensive care beds, or oxygen. Somewhat ironically, the more important ethical issues may lie elsewhere, just as the more important medical issues do not concern intensive care or treatment for COVID‐19 patients, but rather the diversion towards these modes of care at the expense of non‐Covid patients and treatment. In this article I explore how ethicists can and should prioritize which ethical issues to deal with, and develop a method of triage for identification and prioritization of ethical issues both in the next public health emergency and in bioethics more widely.

The Theme of Terrorism in Algerian Contemporary Novel: Selected Examples from the Black Decade

This research is concerned with studying the most important social, ethical, and political issues that were dealt with by the Algerian novelist discourse during the bloody decade, as these writers are considered among the prominent signs in the field of Algerian criticism and creativity, due to the abundance of their productions and creativity in the field of fictional discourse. What the Algerian people were exposed to during that period, and how the country turned in a short period into a volcano of sedition embodied by terrorist operations, so they were able to convey this tragedy in a creative artistic form dominated by the conflict between religion, politics and terrorism, and what prompted us to choose this topic is the urgent desire to shed light on a critical period in the history of Algeria, monitoring the psychological effects produced by the events of the black decade, which we still touch till this day.

Military autonomous drones (UAVs) - from fantasy to reality. Legal and Ethical implications.

Unmanned aerial vehicles, (UAVs), called drones, have recently greatly increased their role from simple surveillance and reconnaissance to increasingly controversial targeted killings. Autonomous drones raise important judicial and ethical issues about responsibility for unintentional harm which will be discussed in this paper. Autonomy refers to respect for human autonomy (in contrast with the autonomy of a drone) and includes the free choice of individuals and groups. In the context of drones used, the ethical principle of autonomy is translated into the human values, responsibility and trust. Some features of these unmanned combat aircraft (UAVs), such as flying at high altitudes, the ability to collect effective information and their impact on civilians, influence decisions on the legality of these weapons, and the distance between the operator of the aircraft and military targets also affects the principles of international law and humanitarian law. The paper will analyze the legal and ethical issues on using drones as a weapon.

Nursing, Caregiving and Psychological support in Chronic Disorders of Consciousness: a scoping review.

Background and aims:The major disorders of consciousness include Coma, Vegetative State, and Minimally Conscious State. The care and the management of patients with Disorders of Consciousness (DOC) have raised several important ethical, social and medical issues. Aim of this review is to evaluate the role of nursing and psychological support in DOC management, in order to improve the quality of life of both patients and their caregivers.Methods:Studies dealing with DOC, nursing and caregiving published in the last 20 years (from January 2000 to June 2020) were identified by searching on PubMed, Web of Science and Cochrane databases.Results:This review highlights the important role of DOC caregivers in the complex management of these frail patients, as well as the need for a specific support and counselling of caregivers. This psychological support may be given by nurses, as they are the healthcare professionals more involved in DOC care and cure.Discussion:Over the last years, specific recommendations for the assessment and rehabilitation of patients with DOC have been promulgated by neurorehabilitation organizations to provide some guidelines for the care and cure of such frail patients. Indeed, DOC patients need a multidisciplinary approach in which both caregivers and nurses have a pivotal role.Conclusions:As the family is a critical and fundamental aspect in the management of DOC patients, it should be considered an integral part of care in the future guidelines. (www.actabiomedica)