We wish to point out an additional consequence of the Catch-22 described by Andreae and colleagues (Andreae et al. 2016). The decades-long research gridlock of controlled drugs has unintentionally...

This argument map represents an argumentation from Heyns, C. . Report of the Special Rapporteur on extrajudicial, summary or arbitrary executions, Christof Heyns . S.l.: United Nations. Human Rights Council. The argument map is open for debate in AGORA-net, search for map ID 9206.

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. (shrink)

The debate on whether insurance companies should be allowed to use results of individuals’ genetic tests for underwriting purposes has been both lively and increasingly relevant over the past two decades. Yet there appears to be no widely agreed upon resolution regarding appropriate and effective regulation. There exists today a gamut of recommendations and actual practices addressing this phenomenon ranging from laissez-faire to voluntary industry moratoria to strict legal prohibition. One obvious reason for such a variance in views and (...) approaches is that there are competing bases for evaluating the outcomes of restricting insurers’ use of such information. For example, an outright ban on the use of genetic test results may seem the best method for protecting against unfair discrimination, while allowing their use may seem to be the best way to foster efficiency in the market for insurance. However, there is also a lack of understanding about how restricting the use of genetic information would play out in the market through the so-called phenomenon of adverse selection. Using economic analysis, we discuss how the type of adverse selection that occurs in insurance markets affects various arguments both in favour and against an outright ban on insurers’ use of genetic tests for pricing insurance. We review arguments based on moral principles . Practical concerns from the insurance industry based on actuarial principles and economic efficiency are also compared. Each perspective is shown to lead to a range of conflicting recommendations about how genetic information should be regulated and these conclusions depend critically on whether one conducts the analysis from the ex ante temporal perspective , from the interim temporal perspective , or from the ex post temporal perspective. (shrink)

The emergence of nanotechnology, with all its promises of economic, social, and medical benefits, along with dire predictions of environmental, health, and safety threats, has occasioned an active debate in the Science and Technology Studies field, in which we have seen five distinct conversations that frame the discussion. The topical threads include ethics, regulation, opportunities and threats including utopian/dystopian visions of the future, public perception, public participation. These conversational distinctions are not absolutes with firm borders as they clearly overlap at (...) many points. Nonetheless, common to all is a strong sense that control and consequence are significant problems that have yet to be addressed adequately by the promoters of nanotechnology. A final section addresses articles on nanotechnology that exemplify the social construction theory of technology. We include herein a selective summary of this recent body of science, technology, and society (STS) journal literature focused on the social and ethical interactions of nanotechnology (SEIN) that has emerged in the last few years. The intent is not to be encyclopedic in coverage, but rather to seek to understand, in a general way, the key issues and concepts STS scholars are discussing. It is clear that STS-oriented scholars are well poised to grapple explicitly with the cultural, socio-political, and ethical dimensions of nanotechnology. Drawing on understandings of earlier socio-technical areas of interest and concern—nuclear power, genetically modified organisms, the human genome—such scholars have moved well beyond the questions of whether and where nanotechnology intersects society. More important is their effort to seek an understanding in depth of exactly how they are socio-politically, culturally, and ethically interconnected. In doing so, SEIN studies have at the same time become increasingly diverse and more sophisticated and mature over the course of the past decade. Scholars have quite rightly recognized the inadequacies of blanket ideas of moratoria versus non-regulatory environments, utopian versus dystopian futures, and whether or not the public has a role to play in nanotechnology decision making. Rather, a more sophisticated, often case specific, flexible understanding of the societal context of a given issue or concern is called for. (shrink)

Care is more than dispensing pills or cleaning beds. It is about responding to the entire patient. What is called “bedside manner” in medical personnel is a quality of treating the patient not as a mechanism but as a being—much like the caregiver—with desires, ideas, dreams, aspirations, and the gamut of mental and emotional character. As automata, answering an increasing functional need in care, are designed to enact care, the pressure is on their becoming more humanlike to carry out the (...) function more effectively. The question becomes not merely whether the care automaton can effect good bedside manner but whether the patient’s response is not feeling deceived by the humanlikeness. It seems the device must be designed either to effect explicit mere human-“likeness,” thus likely undermining its bedside-manner potential, or to fool the patient completely. Neither option is attractive. This article examines the social problems of designing maximally humanlike care automata and how problems may start to erode the human rights of users/patients. The article then investigates the alternatives for dealing with this problem, whether by industrial and professional self-regulation or public-policy initiatives. It then frames the problem in the broader historical perspective in terms of previous bans, moratoria, and other means of control of hazardous and potentially rights-violating techniques and materials. (shrink)

La aparición de las modernas técnicas de modificación genética (CRISPRCas9) ha abierto maravillosas expectativas en el campo de la biomedicina. Sin embargo, su aplicación sobre la línea germinal humana despierta todavía una fuerte oposición por parte de amplios colectivos. A menudo se aduce que factores como el riesgo que implica esta técnica, su propia futilidad, la amenaza implícita a la integridad del genoma humano, o la posibilidad de que acaben dando naturaleza a una nueva eugenesia justifican la necesidad de trazar (...) una prohibición o, al menos, una moratoria sobre ellas. En este texto debatiremos la solvencia de cada uno de estos argumentos, concluyendo que, en realidad, no hay buenos motivos para oponerse a la técnica que nos ocupa. (shrink)

It is frequently claimed that nursing is vital to the safe, humane provision of health care and health service to our populations. It is also recognized however, that nursing is a costly health care resource that must be used effectively and efficiently. There is a growing recognition, from within the nursing profession, health care policy makers and society, of the need to analyse the contribution of nursing to health care and its costs. This becomes increasingly pertinent and urgent in a (...) situation, such as that existing in Ireland, where the current financial crisis has lead to public sector employment moratoria, staff cuts and staffing deficits, combined with increased patient expectation, escalating health care costs, and a health care system restructuring and reform agenda. Such factors, increasingly common internationally, make the identification and effective use of the nursing contribution to health care an issue of international importance. This paper seeks to explore the nature of nursing and the function of the nurse within a 21st century health care system, with a focus on the Irish context. However, this analysis fits into and is relevant to the international context and discussion regarding the nursing workforce. This paper uses recent empirical studies exploring the domains of activity and focus of nursing, together with nurses perceptions of their role and work environment, in order to connect those findings with core conceptual questions about the nature and function of nursing. (shrink)

This paper discusses how to deal with research that threatens to cause harm to society—in particular, whether and in what cases bans and moratoria are appropriate. First, it asks what normative resources philosophy of science may draw on to answer such questions. In an effort to presuppose only resources acknowledgeable across different comprehensive worldviews, it is claimed that the aim of credibility provides a good basis for normative reflection. A close analysis reveals an inner tension inherent in the pursuit (...) of credibility, referred to as the paradox of credibility: Although the aim of credibility involves the goal of being trusted, the immediate pursuit of the goal of being trusted as much as possible can run counter to and undermine the pursuit of credibility. From this inner tension, considerations are derived on what it means to uncompromisingly strive for trustworthiness. When applied to the problem of harmful research, it becomes apparent that it is important to distinguish between different types of cases. Some cases allow science to prevent harm while relinquishing credibility in the associated research area. In contrast, other cases demand preserving subject-specific scientific credibility in order to manage potential harm. (shrink)

Potential applications of genome editing in assisted reproductive technology (ART) raise a vast array of strong opinions, emotional reactions and divergent perceptions. Acknowledging the need for caution and respecting such reactions, we observe that at least some are based on either a misunderstanding of the science or misconceptions about the content and flexibility of the existing legal frameworks. Combining medical, legal and ethical expertise, we present and discuss regulatory responses at the national, European and international levels. The discussion has an (...) EU starting point and is meant as a contribution to the general international regulatory debate. Overall, this paper concludes that gene editing technologies should not be regulated autonomously. Rather, potential uses should be regulated under general, existing frameworks and where applicable by reference to sufficiently equivalent technologies and techniques already subject to specific regulation. To be clear, we do not argue for the hasty introduction of gene editing as a reproductive treatment option in the immediate future. We call for caution with regard to overreaching moratoria and prohibitions that will also affect basic research. We recommend flexible regulations that allow for further responsible research into the potential development of the technology. We call for an open and inclusive debate and argue that scientific communication should claim a more prominent role to counter the danger of widespread misinformation. A high level of transparency and accuracy should guide scientific communication while simultaneously global‐scale responsibility and governance should be fostered by promoting cross‐disciplinary thinking and multi‐level stakeholder involvement in legal and regulatory processes. (shrink)

Potential applications of genome editing in assisted reproductive technology (ART) raise a vast array of strong opinions, emotional reactions and divergent perceptions. Acknowledging the need for caution and respecting such reactions, we observe that at least some are based on either a misunderstanding of the science or misconceptions about the content and flexibility of the existing legal frameworks. Combining medical, legal and ethical expertise, we present and discuss regulatory responses at the national, European and international levels. The discussion has an (...) EU starting point and is meant as a contribution to the general international regulatory debate. Overall, this paper concludes that gene editing technologies should not be regulated autonomously. Rather, potential uses should be regulated under general, existing frameworks and where applicable by reference to sufficiently equivalent technologies and techniques already subject to specific regulation. To be clear, we do not argue for the hasty introduction of gene editing as a reproductive treatment option in the immediate future. We call for caution with regard to overreaching moratoria and prohibitions that will also affect basic research. We recommend flexible regulations that allow for further responsible research into the potential development of the technology. We call for an open and inclusive debate and argue that scientific communication should claim a more prominent role to counter the danger of widespread misinformation. A high level of transparency and accuracy should guide scientific communication while simultaneously global‐scale responsibility and governance should be fostered by promoting cross‐disciplinary thinking and multi‐level stakeholder involvement in legal and regulatory processes. (shrink)

This paper considers the legal position of genetic test results in insurance law in England and Wales. The strict position is that this information is material to the decision of the insurer to offer insurance cover and should be disclosed by insurance applicants. However, the British Government and the Association of British Insurers have agreed to a moratorium on the use of genetic test results in insurance, which will run until 2014. The moratorium prohibits unfavourable treatment of insurance clients on (...) their basis of their genetics, unless it can be justified. In this paper, I consider the notion of genetic discrimination and ask whether it is possible to justify the concept in such a way that its existence should be accepted. The paper suggests that the insurance industry and the general public have different viewpoints on the concept of discrimination, and that this causes much of the disagreement over the issue of using genetic test results in insurance. (shrink)