ELSI priorities for brain imaging

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier.     

Ethics in Research

Summary

This article presents an overview of the history of efforts to protect human subjects in research. It discusses the establishment of international, national, organizational, and institutional procedures designed to protect human participants. The article provides a detailed summary of the principal ethical codes for research and their origins. It includes discussions of the most frequently encountered ethical issues ranging from the initial decision to undertake the project, through the selection and application of the various research procedures, to the analysis and interpretation of the data.     

Cosmic Commons: Contact and Community

Abstract

As we Homo sapiens on planet Earth prepare for possible contact with extraterrestrial life (ET)—especially extraterrestrial intelligent (ETI) life—we need to consider ethics. What will be the ethical posture we adopt as Earth meets space? This article advocates an ethic of praxis based upon the concept of a Cosmic Commons. Intelligent extraterrestrial beings, from their experiences in biotic and abiotic environments, should share with us a universal regard for intelligence (intellilife), respect for biotic evolution, and a sense of responsibility for shared common space in our places in the universe. As we venture from Earth into space, what will be required? Not anxiety over human dis-placement to new worlds; nor should we invest our efforts in irresponsibly exploiting the natural goods of other planets. Rather, we need an ethical transformation of terrestrial human thought and conduct prior to, during, and as a consequence of extraterrestrial explorations and engagements. We need an anticipatory Cosmic Charter.     

Ethics in Publication

Summary

This article highlights ethical issues in publication. It addresses the provenance of ideas, problems with joint authorship, plagiarism, and the practice of duplicate submission of material for publication. Confidentiality and privacy matters, and the protection of human subjects in publication of research and clinical case studies are also discussed. The article further examines biases in literature reviews, and in the biased selection of one's best results for publication, intentional misinterpretation of data and the slanting of discussion, summary, and conclusions. Finally, the article deals with ethical problems that can arise in the publication of sponsored research, and the ethical responsibilities of editors and readers.     

Revising,Correcting, and Transferring Genes

Abstract

The distinction between germline and somatic gene editing is fundamental to the ethics of human gene editing. Multiple conferences of scientists, ethicists, and policymakers, and multiple professional bodies, have called for moratoria on germline gene editing, and editing of human germline cells is considered to be an ethical “red line” that either never should be crossed, or should only be crossed with great caution and care. However, as research on germline gene editing has progressed, it has become clear that not all germline interventions are alike, and that these differences make a significant moral difference, when it comes to ethical questions about research, regulation, clinical application, and medical justification. In this paper, I argue that, rather than lumping all germline interventions together, we should distinguish between revising, correcting, and transferring genes, and I assess the consequences of this move for the ethics of gene editing.     

Legal and Ethical Considerations for Requiring Consent for Apnea Testing in Brain Death Determination

Abstract

The past decade has witnessed escalating legal and ethical challenges to the diagnosis of death by neurologic criteria (DNC). The legal tactic of demanding consent for the apnea test, if successful, can halt the DNC. However, US law is currently unsettled and inconsistent in this matter. Consent has been required in several trial cases in Montana and Kansas but not in Virginia and Nevada. In this paper, we analyze and evaluate the legal and ethical bases for requiring consent before apnea testing and defend such a requirement by appealing to ethical and legal principles of informed consent and battery and the right to refuse medical treatment. We conclude by considering and rebutting two major objections to a consent requirement for apnea testing: (1) a justice-based objection to allocate scarce resources fairly and (2) a social utility objection that halting the diagnosis of brain death will reduce the number of organ donors.     

Dialectical Asymmetry: Commentary on an Article by Peter Shabad

ABSTRACT

In this article, I explore the radical asymmetry set forth in the ethical turn, but suggest that Shabad develops a more refined notion of asymmetry grounded in the dialectics of giving and receiving. He develops what I call dialectical asymmetry where the reciprocity of human exchange offers an ethical demand for both analyst and patient. I suggest a productive comparison between Shabad’s perspective and the double asymmetry of the ethical seduction developed in the French tradition.     

Rethinking covert stuttering

PurposeThe experience of passing as fluent, also called covert stuttering, has been uncritically framed as an inherently negative pursuit. Historically passing has been understood as a repression of one’s true, authentic self in response to either psychological distress or social discrimination. The authors of this paper seek a more nuanced understanding of passing. We ask, how must a person relate to herself in order to pass as fluent?MethodologyThis is a qualitative research study in which the authors utilized the ethical theories of philosopher Michel Foucault to contextualize data obtained from semi-structured interviews with nine participants who pass as fluent.ResultsRather than a repression of an authentic self our data suggests passing is more usefully understood as a form of resistance by people who stutter to a hostile society. Participants learned from experiences of delegitimization that their stuttering had ethical ramifications. Consequently, they used a variety of self-forming practices to pass and thereby achieve the privileges that come with perceived able-bodiedness.ConclusionPassing as fluent is not an inauthentic form of stuttering but a form of stuttering that is produced through the use of specific technologies of communication. These technologies of communication are constituted by the unique ethical relationship of the person who stutters with herself. Passing can be understood as an active form of resistance rather than a passive form of repression. By theorizing passing as fluent as an ethical relationship, we open up the possibility of changing the relationship and performing it differently.     

The Nature and Significance of Behavioural Genetic Information

In light of the human genome project, establishing the genetic aetiology of complex human diseases has become a research priority within Western medicine. However, in addition to the identification of disease genes, numerous research projects are also being undertaken to identify genes contributing to the development of human behavioural characteristics, such as cognitive ability and criminal tendency. The permissibility of this research is obviously controversial: will society benefit from this research, or will it adversely affect our conceptions of ourselves and each other? When assessing the permissibility of this research, it is important to consider the nature and deterministic significance of behavioural genetic information. Whilst todate there has been much discussion and debate about the properties of genetic information per se and genetic determinism, this has not been applied to behavioural genetic research and its ethical implications. Therefore, this paper elucidates how behavioural genetic information can be distinguished from other types of genetic and non-genetic information and also synthesises the determinative significance of genetic factors for the development of human behavioural traits. Undertaking this analysis enables the ethical issues raised by this research to be debated in an appropriate context and indicates that separate policy considerations are warranted.

     

Rethinking Research Ethics

Contemporary research ethics policies started with reflection on the atrocities perpetrated upoconcentration camp inmates by Nazi doctors. Apparently, as a consequence of that experience, the policies that now guide human subject research focus on the protection of human subjects by making informed consent the centerpiece of regulatory attention. I take the choice of context for policy design, the initial prioritization of informed consent, and several associated conceptual missteps, to have set research ethics off in the wrong direction. The aim of this paper is to sort out these confusions and their implications and to offer instead a straightforward framework for considering the ethical conduct of human subject research. In the course of this discussion I clarify different senses of autonomy that have been confounded and present more intelligible justifications for informed consent. I also take issue with several of the now accepted dogmas that govern research ethics. These include: the primacy of informed consent, the protection of the vulnerable, the substitution of beneficence for research's social purpose, and the introduction of an untenable distinction between innovation and research.     

A critical commentary on follow-up studies and “desistance” theories about transgender and gender-nonconforming children

ABSTRACT

Background: It has been widely suggested that over 80% of transgender children will come to identify as cisgender (i.e., desist) as they mature, with the assumption that for this 80%, the trans identity was a temporary “phase.” This statistic is used as the scientific rationale for discouraging social transition for pre-pubertal children. This article is a critical commentary on the limitations of this research and a caution against using these studies to develop care recommendations for gender-nonconforming children.

Methods: A critical review methodology is employed to systematically interpret four frequently-cited studies that sought to document identity outcomes for gender-nonconforming children (often referred to as “desistance” research).

Results: Methodological, theoretical, ethical, and interpretive concerns regarding four “desistance” studies are presented. The authors clarify the historical and clinical contexts within which these studies were conducted to deconstruct assumptions in interpretations of the results. The discussion makes distinctions between the specific evidence provided by these studies versus the assumptions that have shaped recommendations for care. The affirmative model is presented as a way to move away from the question of, “How should children's gender identities develop over time?” toward a more useful question: “How should children best be supported as their gender identity develops?”

Conclusion: The tethering of childhood gender diversity to the framework of “desistance” or “persistence” has stifled advancements in our understanding of children's gender in all its complexity. These follow-up studies fall short in helping us understand what children need. As work begins on the 8th version of the Standards of Care by the World Professional Association for Transgender Health, we call for a more inclusive conceptual framework that takes children's voices seriously. Listening to children's experiences will enable a more comprehensive understanding of the needs of gender-nonconforming children and provide guidance to scientific and lay communities.     

Rescuing Human Embryonic Stem Cell Research: The Blastocyst Transfer Method

Despite the therapeutic potential of human embryonic stem (HES) cells, many people believe that HES cell research should be banned. The reason is that the present method of extracting HES cells involves the destruction of the embryo, which for many is the beginning of a person. This paper examines a number of compromise solutions such as parthenogenesis, the use of defective embryos, genetically creating a “pseudo embryo” that can never form a placenta, and determining embryo death, and argues that none of these proposals are likely to satisfy embryoists, that is, those who regard the embryo as a person. This paper then proposes a method of extracting HES cells, what might be called the Blastocyst Transfer Method, that meets the ethical requirements of embryoists, and it considers some possible concerns regarding this method. It concludes by encouraging future HES cell research to investigate this method.     

On the ethical analysis of value issues in public decision-making

Abstract

The nature, methodology, importance and implications of an ethical analysis of value issues pertaining to public decision-making is not evident. In this paper I would like to address these issues by posing the following questions:

• Why is it important to focus on values in any process of public decision-making?

• What is the nature of an ethical analysis of the value issues involved?

• What is the basis, if any, for ethical analysis that moves beyond relativism and subjectivity?

• What difference can such an ethical analysis make to public decision-making?

During the course of discussing these issues, the question “What is ethics?” will be addressed in passing, as well as the usual objections against ethics and the consideration of value issues in public decision-making, namely that

• values cannot be analysed and discussed objectively

• values and ethics are relative to people and cultures

• value and ethical questions cannot be settled in a rational manner

• ethics cannot provide answers

• arguments about value and ethical issues move in circles, taking us nowhere

• values and ethics are so intertwined with emotions and biases that one cannot take them seriously in any process of public decision-making.

     

Hobbes’s materialism and Epicurean mechanism

ABSTRACT

Hobbes belonged to philosophical and scientific circles grappling with the big question at the dawn of modern physics: materialism and its consequences for morality. ‘Matter in motion’ may be a core principle of this materialism but it is certainly inadequate to capture the whole project. In wave after wave of this debate the Epicurean view of a fully determined universe governed by natural laws, that nevertheless allows to humans a sphere of libertas, but does not require a creator god or teleology to explain it, comes up against monotheism and its insistence on the incoherence of an ordered world in the absence of a God and his purposes. The following questions were central to this debate: (1) Can we understand the universe as law-governed in the absence of a god? (2) If so, what room is there in a fully determined mechanical universe for human freedom? (3) If humans do enjoy freedom, does the same hold for other animals? (4) Is this freedom compatible with standard views of morality? (5) Is there an analogue between the material world as law-governed and human social order? (6) If so does it also obtain for other animals?     

Confronting Deep Moral Disagreement: The President's Council on Bioethics,Moral Status,and Human Embryos

The report of the President's Council on Bioethics, Human Cloning and Human Dignity, addresses the central ethical, political, and policy issue in human embryonic stem cell research: the moral status of extracorporeal human embryos. The Council members were in sharp disagreement on this issue and essentially failed to adequately engage and respectfully acknowledge each others' deepest moral concerns, despite their stated commitment to do so. This essay provides a detailed critique of the two extreme views on the Council (i.e., embryos have full moral status or they have none at all) and then gives theoretical grounding for our judgment about the intermediate moral status of embryos. It also supplies an account of how to address profound moral disagreements in the public arena, especially by way of constructing a middle ground that deliberately pays sincere respect to the views of those with whom it has deep disagreements.     

Four Faces of Fair Subject Selection

Abstract

Although the principle of fair subject selection is a widely recognized requirement of ethical clinical research, it often yields conflicting imperatives, thus raising major ethical dilemmas regarding participant selection. In this paper, we diagnose the source of this problem, arguing that the principle of fair subject selection is best understood as a bundle of four distinct sub-principles, each with normative force and each yielding distinct imperatives: (1) fair inclusion; (2) fair burden sharing; (3) fair opportunity; and (4) fair distribution of third-party risks. We first map out these distinct sub-principles, and then identify the ways in which they yield conflicting imperatives for the design of inclusion and exclusion criteria, and the recruitment of participants. We then offer guidance for how decision makers should navigate these conflicting imperatives to ensure that participants are selected fairly.     

Mandatory neurotechnological treatment: ethical issues

What if neurofeedback or other types of neurotechnological treatment, by itself or in combination with behavioral treatment, could achieve a successful “rewiring” of the psychopath’s brain? Imagine that such treatments exist and that they provide a better long-term risk-minimizing strategy compared to imprisonment. Would it be ethical to offer such treatments as a condition of probation, parole, or (early) prison release? In this paper, I argue that it can be ethical to offer effective, non-invasive neurotechnological treatments to offenders as a condition of probation, parole, or (early) prison release provided that: (1) the status quo is in no way cruel, inhuman, degrading, or in some other way wrong, (2) the treatment option is in no way cruel, inhuman, degrading, or in some other way wrong, (3) the treatment is in the best interests of the offender, and (4) the offender gives his/her informed consent.     

Ethical Concerns About Human Genetic Enhancement in the Malay Science Fiction Novels

Advancements in science and technology have not only brought hope to humankind to produce disease-free offspring, but also offer possibilities to genetically enhance the next generation’s traits and capacities. Human genetic enhancement, however, raises complex ethical questions, such as to what extent should it be allowed? It has been a great challenge for humankind to develop robust ethical guidelines for human genetic enhancement that address both public concerns and needs. We believe that research about public concerns is necessary prior to developing such guidelines, yet the issues have not been thoroughly investigated in many countries, including Malaysia. Since the novel often functions as a medium for the public to express their concerns, this paper explores ethical concerns about human genetic enhancement expressed in four Malay science fiction novels namely Klon, Leksikon Ledang, Transgenesis Bisikan Rimba and Transgenik Sifar. Religion has a strong influence on the worldview of the Malays therefore some concerns such as playing God are obviously religious. Association of the negative image of scientists as well as the private research companies with the research on human genetic enhancement reflects the authors’ concerns about the main motivations for conducting such research and the extent to which such research will benefit society.     

Perception of threat and safety at work among employees in the Norwegian ministries after the 2011 Oslo bombing

Background and objectives: Terrorism can heighten fears and undermine the feeling of safety. Little is known, however, about the factors that influence threat and safety perception after terrorism. The aim of the present study was to explore how proximity to terror and posttraumatic stress reactions are associated with perceived threat and safety after a workplace terrorist attack. Design and methods: A cross-sectional questionnaire survey was administered to employees in 14 of 17 Norwegian ministries 9–10 months after the 2011 bombing of the government headquarters in Oslo (n = 3520). Results: About 198 of 1881 employees completing the survey were at work when the bomb exploded. Regression analysis showed that this high-exposed group had elevated perceived threat (β = 0.36; 95% CI = 0.19 to 0.53) and reduced perceived safety (β = ?0.42; 95% CI = ?0.62 to ?0.23) compared to a reference group of employees not at work. After adjusting for posttraumatic stress reactions, however, proximity to the explosion no longer mattered, whereas posttraumatic stress was associated with both high perceived threat (β = 0.55; 95% CI = 0.48 to 0.63) and low perceived safety (β = ?0.71; 95% CI, ?0.80 to ?0.63). Conclusion: Terror-exposed employees feel more threatened and less safe after a workplace terrorist attack, and this is closely linked to elevated levels of posttraumatic stress reactions.     

Thirty Years Later: An Oncologist Reflects on Kubler-Ross's Work

As compared with conventional vaccine production systems, plant-made vaccines (PMVs) are said to enjoy a range of advantages including cost of production and ease of storage for distribution in developing countries. In this article, we introduce the science of PMV production, and address ethical issues associated with development and clinical testing of PMVs within three interrelated domains: PMVs as transgenic plants; PMVs as clinical research materials; and PMVs as agents of global health. We present three conclusions: first, while many of the ethical issues raised by PMVs are familiar, PMVs add a new dimension to old issues, and raise some novel issues for ethicists and policy-makers; secondly, it is premature to promise broad applicability of PMVs across the developing world without having demonstrated their feasibility; thirdly, in particular, proponents of PMVs as a solution to global health problems must, as a condition of the ethical conduct of their research, define the commercial feasibility of PMVs for distribution in the developing world.