Bioethical Questions Research Articles

Greek National Prevention Program for Thalassemia and Other Hemoglobinopathies and Contemporary Bioethical Reflections. The Experience of Northern Greece

Hemoglobinopathies constitute the most frequent monogenic disorders worldwide and are caused by gene mutations that affect the synthesis of the normal hemoglobin chains or contribute to structural changes of the Hb molecule. In Greece hemoglobinopathies are the most frequent genetic diseases and the Greek National Prevention Program for Thalassemia and other Hemoglobinopathies is the most typical international example of a voluntary prevention screening program. During a 20-year study period, gene interactions in 437 pregnancies were related with risk of β-thal major, sickle cell disease and Hb Bart’s hydrops fetalis. 437 prenatal diagnoses were performed and (22.2%, N=97) fetuses were homozygotes or compound heterozygotes for clinically significant mutations. The couples were informed of all the currently available therapeutic approaches for β-TM or sickle cell disease. The decision for the termination or continuation of the pregnancy was left to parental choice and the termination of the pregnancy was generally accepted and 91 from 97 affected pregnancies were terminated. The “success” of a prevention program depends on the commitment and the will of the governments, the consolidation of strong educational campaigns, the continuing public education and health professional awareness, the existence of reliable laboratories. Greek National Bioethics & Techno ethics Committee gives a framework about the bioethical questions arising as well as the “Bio laws” in the Greek constitution. In our constitution the availability of prenatal diagnosis, the social bioethical framework as expressed by the National Bioethics committee, the contemporary role of religion in public life (Greek Orthodox Church less influential) and the existing legal frame of the termination of pregnancy in cases of severe hemoglobinopathies contributed to the success of the Prevention programme.

Engaging Diversity

Engaging Diversity

Effects of an intervention on adolescents with overweight / obesity

The amount of patients which develop chronic irreversible illness rises as the life expectancy grows among countries. When cancer patients step into final stages of their illness the complexity of questions and situations is evident. Frequently, terminally ill cancer patients choose to use unprescribed therapies at their own risk to alleviate suffering. When a generalist doctor comes across these situations, bioethical questions tend to raise among physician’s minds when assisting the patient and family. In this paper we argue about phosphoethanolamine supplement scenario: the different points of view of regulatory agencies; bioethical considerations; theoretical aspects of the molecule as phospholipid precursor; the biological importance the relation to others systems in different levels; pre-clinical and clinical safety data.

Visão bioética na quarentena no contexto da covid-19: revisão integrativa

Abstract This study seeks to relate the bioethical questions about the quarantine as a mitigation tool of the COVID-19 pandemic in society. It is an integrative review, following criteria of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses at the pertinent phases. The search was carried out in the databases Biblioteca Virtual em Saúde, PubMed and SciELO, searching texts published between 2019 and 2020, in English, Spanish and Portuguese. Among the identified articles, seven were selected to be part of this work, of those, two are from the United States, two from Spain, one from Finland, one from Australia, and one from Bangladesh. The studies show that, despite the quarantine and the distancing being the only strategies known up to this moment, developing politics that consider bioethical principles, focusing on, for example, socially vulnerable populations, who need support to establish this measure, is necessary.

Political Bioethics.

If bioethical questions cannot be resolved in a widely acceptable manner by rational argument, and if they can be regulated only on the basis of political decision-making, then bioethics belongs to the political sphere. The particular kind of politics practiced in any given society matters greatly: it will determine the kind of bioethical regulation, legislation, and public policy generated there. I propose approaching bioethical questions politically in terms of decisions that cannot be "correct" but that can be "procedurally legitimate." Two procedures in particular can deliver legitimate bioethical decisions, once combined: expert bioethics committees and deliberative democracy. Bioethics so understood can exceed bioethics as a moral project or as a set of administrative principles to regulate medical practice; it can now aspire to a democratic project that involves ordinary citizens as far as reasonably possible. I advance this argument in four steps: (1) using the example of human germline gene editing, (2) I propose a general understanding of proceduralism, and (3) then combine two types and (4) conclude with a defense of majoritarian proceduralism. I develop this argument in terms of one example: germline gene editing.

An Overview of the Embryo Adoption Debate

In vitro fertilization (IVF) is opposed by the Catholic Church because it replaces the conjugal act. However, IVF has resulted in an ethical issue that the Catholic Church does not have a clear position on. What to do with the undesired cryopreserved embryos resulting from the IVF process? The Congregation for the Doctrine of the Faith, in its 2008 instruction on certain bioethical questions Dignitas Personae, commented on three proposals on what to do with them and stated that the situation for abandoned embryos “cannot be resolved.” But what about those not abandoned but undesired? Even before the issuance of Dignitas Personae, a debate developed regarding the third proposal of embryo adoption, which continues unresolved. We will explore the embryo adoption debate from 2007-2018 through the arguments of fifteen authors, with eight of them arguing not in favor of it and seven arguing in favor.

Complexities of biomedicine, theology and politics in Islamic bioethical deliberation over female genital procedures: a reply to ‘The prosecution of Dawoodi Bohra women’ by Richard Shweder

Professor Richard Shweder’s target article, ‘The prosecution of Dawoodi Bohra women: some reasonable doubts’, lays bare the ways in which political motivations influence moral, ethical and legal deliberations over female genital cutting/circumcision in society. He argues that activist stakeholders deploy a provocative lexicon and biased clinical data in order to silence dissenting views about, and legally restrict the practice of, female genital cutting/circumcision. He suggests that a more balanced approach to discourse and more nuanced data analysis would open up avenues for tolerating religiously motivated female genital procedures carried out among Dawoodi Bohra communities residing in liberal democracies. Building upon his sociocultural analysis, this reply will explore the confluence of biomedical, theological and political considerations influencing contemporary Islamic bioethical discussion over the practice. I use my participation in the 2017–19 Fiqh Council of North America’s deliberations over female genital cutting to explore how (1) biomedical understandings and health outcomes data, (2) theological concerns over scriptural evidence and juridical best practices, and (3) political and social considerations influenced religious evaluation of the practice. I contend that Islamic juridical academies pursuing bioethical deliberation are not (and should not consider themselves to be) engaging in the routine application of scriptural reasoning in order to furnish guidance to a Muslim polity; rather, bioethics questions are necessarily layered with social and political considerations that require focused examination. This added dimensionality underscores the need for Islamic bioethics deliberation to move beyond the dyad of clinicians and jurists, and to include social scientists, public policy experts and other relevant scholars in order to properly conceive of and address the ethical problem space. Moreover, in the case of female genital cutting/circumcision, the bioethics veers towards biopolitics, making multidisciplinary deliberation all the more important in both religious and secular spaces.

Ethical and bioethical aspects concerning the disclosure of medical information for a fair reason.

The objective of this study was to emphasize the importance of legal and bioethical knowledge in maintaining medical confidentiality, especially in situations when there is a diagnosis of HIV infection. A literature review of studies published in the Scientific Electronic Library Online and National Library of Medicine databases was performed. Sixteen studies available in full, online, and free, published between 2010 and 2020, were selected. The studies highlighted that, despite the ethical duty to breach confidentiality for the protection of third parties, many doctors are reluctant to reveal this secret due to the power of stigmatization and social discrimination related to the diagnosis of HIV infection, which affects integrity, counseling, and capability to treat patients. HIV diagnosis implies bioethical and legal questions. Respect for medical confidentiality is a matter to be discussed, as there is a need to protect the privacy of the patient, at the same time the responsibility to preserve the health of others.

Die Phänomenologie der Medizin und ihre feministische Kritik

AbstractThe phenomenology of medicine is that part of the research field of the philosophy of medicine that asks about the subjective experience of illness. In contrast to the philosophy of medicine, the phenomenological approaches explicitly include medical and bioethical questions as part of their research interests. The paper provides an overview of the most important questions and topics of the phenomenology of medicine. Subsequently I will refer to the fundamental critique articulated by feminist positions in the field of phenomenology of medicine. In addition to the socio-political contextualisation of the experience of illness, this also includes the necessary recourse to empirical research.

COVID-19 Disparities and Vaccine Hesitancy in Black Americans: What Ethical Lessons Can Be Learned?

This state of the art review focuses on bioethical questions and considerations from research findings and methodological issues, including design and recruitment of participants, in studies related to COVID-19 vaccine hesitation in Black individuals. Ethical concerns identified were applied to otolaryngology with recommendations for improving health inequities within subspecialties. An internet search through PubMed, CINAHL, and socINDEX was conducted to identify articles on COVID-19 vaccine hesitation among the Black population between 2020 and 2021. A systematic review approach was taken to search and analyze the research on this topic, which was coupled with expert analysis in identifying and classifying vital ethical considerations. The most common COVID-19 vaccine hesitation factors were related to the development of the vaccine, mistrust toward government agencies, and misconceptions about safety and side effects. These findings raised bioethical concerns around mistrust of information, low health literacy, insufficient numbers of Black participants in medical research, and the unique positions of health professionals as trusted sources. These bioethical considerations can be applied in otolaryngology and other health-related areas to aid the public in making informed medical decisions regarding treatments, which may reduce health inequalities among Black Americans and other racial and ethnic minority groups. Addressing ethical questions by decreasing mistrust, tailoring information for specific populations, increasing minority representation in research, and using health professionals as primary sources for communicating health information and recommendations may improve relationships with Black communities and increase acceptance of new knowledge and therapies such as COVID-19 vaccination.

The End of Factory Farming

The End of Factory Farming

Advance Directives and Research Advance Directives

Advance Directives and Research Advance Directives

The human being and the world as God’s creation: Present-day ethical conflicts and consequences of the doctrine of creation in the perspective of the doctrine of justification

All the medical and bioethical questions, ranging from stem cell research to converging technologies and synthetic biology, touch on the question regarding the image of human beings and their position in the cosmos, by which we are able to orient ourselves. This article argues that the biblical belief in creation and the discourse about humans as created beings by and in the image of God can still be proclaimed as a viable form of human self-interpretation in the present. The distinction between practical knowledge and knowledge of orientation may be of help here. Guidance for how to live and act is not best found in abstract principles, but rather in meaningful stories, in metaphors and symbols. On this level, too, is also where faith in creation and the certainty of our own creatureliness is located.Contribution: This article interprets the doctrine of creation by a hermeneutical theology. It analyses the interdependence between hermeneutics and criticism in the process of reinterpreting the classical propositions about the human being and the world as God’s creation and the relation of anthropology and ethics. The aim is to show what might be the contribution of Christian faith in creation to the approach of an ethics of responsibility in the field of bioethics and ecology. The specific contribution of this article to current debates on an ethics of creation is the thesis that the key to a well-balanced theological approach to all this is the Pauline doctrine of justification as interpreted by the protestant reformers.

Affirming the Existence and Legitimacy of Secular Bioethical Consensus, and Rejecting Engelhardt's Alternative: A Reply to Nick Colgrove and Kelly Kate Evans.

One of the most significant and persistent debates in secular clinical ethics is the question of ethics expertise, which asks whether ethicists can make justified moral recommendations in active patient cases. A critical point of contention in the ethics expertise debate is whether there is, in fact, a bioethical consensus upon which secular ethicists can ground their recommendations and whether there is, in principle, a way of justifying such a consensus in a morally pluralistic context. In a series of recent articles in this journal, Janet Malek defends a positive view of ethics expertise, claiming that secular ethicists should comport their recommendations with bioethical consensus. In response, Nick Colgrove and Kelly Kate Evans deny the existence of a secular bioethical consensus; question why, even if it did exist, consensus should be considered a reliable way of resolving bioethical questions; and recommend a friendlier approach to clinical ethics based on the thought of H. Tristram Engelhardt Jr. In this article, I respond to Colgrove and Evans on all three points. In part one, I show there is a secular bioethical consensus but note it could be better consolidated and created through a more systematic and inclusive process. In part two, I argue that bioethical consensus is morally justified but note that this justification cannot be plausibly based upon claims that it only invokes moral principles available to or shared by all. In part three, I argue Engelhardt's approach cannot be described as "friendlier" to clinical ethics because it is incompatible with many current healthcare laws and policies.

The Artistic Status of Bio-art

Abstract This paper aims to define Bio-art by strengthening its artistic status through two distinct approaches. The first is based on the acceptance that the concept of Bio-art includes both the term “art” and the term “bio” that could stand for Biology, Biotechnology, and Bioethics. It is argued that despite its direct connection to scientific research, Bio-art is only partly linked to the methods of the pure science of Biology, while it stands closer to the technoscience of Biotechnology. However, while bio-artists often use scientific methods and techniques, they eventually focus on bioethical questions. To amplify the artistic status of bio-artworks, we claim that they are kinds of visual “enthymemes”, a term used by Aristotle to define incomplete rhetoric syllogisms linking all recipients to common questions. Our second approach is developed around Levinson’s intentional-historical theory, showing that Bio-art belongs to the evolutionary narrative of art and artistic intentions. We allege interconnections of distinct features of bio-artworks with artworks of different eras that in the context of a retrospective view are to be understood as having paved the way for the emergence of Bio-art.

What Do Genomics Studies Really Mean? A New Resource

AbstractResearch on how genetics contribute to human behavior and achievement raises many bioethical questions. What are we to make, for example, of a study published last year that found that students with genetic variants associated with educational attainment (years of education) took more advanced math classes in ninth grade? Does this finding have implications for education practice? Should it? How so? Questions like these serve as reminders that genetic science has long been misused to draw conclusions about individuals and groups of people, conclusions laced with racism and other biases. As research on human genomics ramps up, now is the time to ramp up science communication about what these studies do and, importantly, do not show. A new feature on The Hastings Center's website does just that.

Transhumanism, human enhancement and bioethical challenges of emerging technologies for the 21st century

In this article we start by submitting a definition of transhumanism and then turn to the main bioethical problems that arise from it, with particular attention to the so-called human enhancement perspective. Secondly, and without being exhaustive, we shall seek to identify some of the main challenges posed by emerging sciences in the 21st century, specially with an eye to convergent technologies or NBICs (nanotechnology, biotechnology, informatics and cognitive sciences). And finally, we end up by enumerating some of the bioethical questions every researcher should take into account before considering applying any new technology on humans in the coming decades.

Design Bioethics: A Theoretical Framework and Argument for Innovation in Bioethics Research

Empirical research in bioethics has developed rapidly over the past decade, but has largely eschewed the use of technology-driven methodologies. We propose “design bioethics” as an area of conjoined theoretical and methodological innovation in the field, working across bioethics, health sciences and human-centred technological design. We demonstrate the potential of digital tools, particularly purpose-built digital games, to align with theoretical frameworks in bioethics for empirical research, integrating context, narrative and embodiment in moral decision-making. Purpose-built digital tools can engender situated engagement with bioethical questions; can achieve such engagement at scale; and can access groups traditionally under-represented in bioethics research and theory. If developed and used with appropriate rigor, tools motivated by “design bioethics” could offer unique insights into new and familiar normative and empirical issues in the field.

Le droit koweïtien et les questions relatives au début et à la fin de vie

Kuwaiti law is inspired by Sharia. The questions about the beginning and the end of life should be governed by Islamic law. Several answers to the bioethical questions were emitted by the Administration of the Deliverance of Fatwas. Moreover, this institution, created to issue fatwas, plays the role of an ethics committee. In some respects, it has succeeded in filling the legislative gap in certain bioethical fields. Nevertheless, the absence of clear and precise legislative answers to questions related to the life and death (medically assisted procreation, human cloning, therapeutic relentlessness), creates a legal uncertainty. In addition, the study of the answers given by Kuwaiti law in biomedical field reveals a gap between a conservative Fatwas dispensing administration and an avant-garde legislator.

Health Union and Bioethical Union: Does Hippocrates Require Socrates?

Health Union raises bioethical questions ranging from resource allocation and risk balancing to respect for specific bioethical prohibitions, as an analysis of the European Parliament’s proposal for such a union shows. To date, European Union (EU) health law has succeeded in avoiding or circumscribing such questions, leading to the limited and inconsistent patchwork of EU bioethical provisions we currently have. Can this continue with a Health Union? This article argues that whilst full harmonisation is neither possible nor desirable, Health Union should entail a deepening of bioethical integration. This should occur via a robust legislative process involving citizen panels and ethical advisory group input; if Treaty change occurs, this process could be included in primary law. This is so for three reasons. First, addressing Health Union’s unavoidable bioethical questions coherently and openly reduces the risk of inadequate protection and, conversely, of interest groups “smuggling in” unsupported answers. Second, this will ensure respect for primary law, including Article 2 TEU and Article 3 CFR. Third, EU biolaw offers a middle ground between limited national and weak international human rights law on bioethics, whilst also consolidating European identity.