ABSTRACT The aim of this article is to determine whether genetic engineering is ever acceptable. The prominent arguments which have been put forward by the opponents of genetic engineering are examined and evaluated. The arguments ‘we should not interfere with nature’, ‘we should not alter the genetic constitution of organisms’, and ‘we should not alter the genetic constitution of organisms to this extent’are found to be inadequate as valid arguments against all genetic engineering. However, it remains a possibility that there (...) is nothing intrinsically unethical about genetic engineering, but that the risks of misuse render the techniques ethically unacceptable. Since universal legislation is not possible, and the risks of genetic engineering are so real, this alone may be sufficient to dismiss all genetic engineering as wrong. (shrink)

Sara Ahmed’s enquiry on what it means for sexuality to be lived as oriented from the work Queer Phenomenology inspired the art series ‘A Sexual Series’, based on post-humanist theory and asexual experience. Shapes of performative alter egos materialized from a queer cyborg position of technologically enhanced crip experiences (the strong symbolical constructing process of straightening scoliosis surgery). From being a glitch of the past towards a post-individualist future, the artificial intelligence sexbot is a metaphoric, elevated cyborg drag version of (...) the artist to embody asexuality and queer Otherness. Based on multitudes of CUNTraDICKtions to encourage self-reflection, the series explores the complexities of ob/scene and on/scene performances; the position of a sex positive asexual as well as questions of belonging as a naturally artificial rebel. (shrink)

BackgroundPublic health scholars have long called for preparedness to help better negotiate ethical issues that emerge during public health emergencies. In this paper we argue that the concept of ethical preparedness has much to offer other areas of health beyond pandemic emergencies, particularly in areas where rapid technological developments have the potential to transform aspects of health research and care, as well as the relationship between them. We do this by viewing the ethical decision-making process as a behaviour, and conceptualising (...) ethical preparedness as providing a health research/care setting that can facilitate the promotion of this behaviour. We draw on an implementation science and behaviour change model, COM-B, to demonstrate that to be ethically prepared requires having the capability, opportunity, and motivation to work in an ethically prepared way.MethodsWe use two case examples from our empirical research—one pandemic and one non-pandemic related—to illustrate how our conceptualisation of ethical preparedness can be applied in practice. The first case study was of the UK NHSX COVID-19 contact tracing application case study involved eight in-depth interviews with people involved with the development/governance of this application. The second case involved a complex case regarding familial communication discussed at the UK Genethics Forum. We used deductive qualitative analysis based on the COM-B model categories to analyse the transcripbed data from each case study.ResultsOur analysis highlighted that being ethically prepared needs to go beyond merely equipping health professionals with skills and knowledge, or providing research governance actors with ethical principles and/or frameworks. To allow or support these different actors to utilise their skills and knowledge, a focus on the physical and social opportunity is important, as is a better understanding the role of motivation.ConclusionsTo understand ethical preparedness, we need to view the process of ethical decision-making as a behaviour. We have provided insight into the specific factors that are needed to promote this behaviour—using examples from both in the pandemic context as well as in areas of health research and medicine where there have been rapid technological developments. This offers a useful starting point for further conceptual work around the notion of being ethically prepared. (shrink)

There is a growing consensus that the offer of a reasonable compensation for oocyte donation for reproductive treatment is acceptable if it does not compromise voluntary and altruistically motivated donation. However, how to translate this ‘reasonable compensation’ in practice remains unclear as compensation rates offered to oocyte donors between different European Union countries vary significantly. Clinics involved in oocyte donation, as well as those in other medical contexts, might be encouraged in calculating a more consistent and transparent compensation for donors (...) if the elements that constitute a reasonable compensation are explicated. In doing so, lessons can be learnt from living organ donation and medical research participation. Practices in which the elements of a reasonable compensation for the individuals involved have already been more defined in the literature. By means of analogical reasoning, we will outline the different components of a reasonable compensation and subsequently apply these to the context of oocyte donation. We will argue that oocyte donors should first of all be reasonably reimbursed direct expenses related to the donation, without standard remuneration of lost wages. Second, donating oocytes requests a serious time investment, therefore donors are entitled to suitable compensation for their time spent and efforts made. Finally, we will explain that a reasonable compensation consisting of these two components allows for altruism to remain the key value of oocyte donation for reproductive treatment. However, if we acknowledge that donors’ motives are more complex and often include reasons from self-interest, the reasonable compensation may be complemented with modest (non)monetary benefits. (shrink)

Japanese conversational data reveal that Japanese speakers produce, and recipients orient to, smaller units of talk than what the conventional notion of a `turn constructional unit' represents. Unlike TCUs, such units may be grammatically, prosodically and pragmatically incomplete and may happen on the sub-phrasal level of discourse, as Japanese conversationalists prosodically break up even a single semantic constituent with the insertion of an interactional particle. In this article, I give numerous examples of how such practices of separating a segment of (...) talk are not random but are precisely embedded in the sequential organization of talk that participants co-create. I argue that such segmentation contributes to the interactional co-construction of a turn so as to highlight specifically a `move' Within the larger action that is implemented by the TCU. Doing so thereby provides opportunities for the participants to deal with local contingency problems without changing the global level of the pragmatic work of the turn. (shrink)

We study price formulas suited for empirical research in financial markets in which put–call parity is satisfied. We find a connection between risk and the bid–ask spread. We further study the compatibility of the model with market frictions, and determine market subsets where the Fundamental Theorem of Asset Pricing applies. Finally, we characterize the price formula.

Despite its focus on consent the new Human Tissue Act 2004 allows for testing without consent where a relative could benefitIn recognition of the fact that genetic test results in people can have implications for close relatives, the new Human Tissue Act 2004 allows for a direction to access a person’s tissue so that testing can be carried out for the benefit of a relative, without the consent of that person. Clinical practice governed by common law and statute, before this (...) act, acknowledged that the disclosure, without consent, of the results of a genetic test, is ethically permissible in extreme situations for the benefit of a relative. New testing for the benefit of a relative without donor consent challenges the principle that informed or adequate consent should be obtained before a genetic test with considerable predictive powers is carried out. The debate surrounding the analogous situation of HIV testing concluded that in very rare cases, disclosure of an HIV result without consent may be justified, but testing without consent is a professional misconduct. This part of the legislation is controversial and deserves further debate. The Human Tissue Authority should take measures to limit the potential harm that can be caused by this provision.IntroductionAfter much debate, the new Human Tissue Act 2004 was passed by parliament in November 2004. Implementation of this act may be staggered, but it will be fully operational in May 2006. This act has several provisions that have implications in clinical practice for the use of stored tissue or samples containing cells. These provisions allow the Human Tissue Authority to permit access to human tissue for the purpose of obtaining scientific or medical information about a person for the benefit of another family member, without the consent of the donor . …. (shrink)

The UK Genethics Club was established in November 2001 in order to provide a national forum of ethics support for the profession of clinical genetics in the UK. The forum brings together health professionals, medical ethicists and lawyers and support is provided through detailed discussion of cases and sharing of good practice. Clinical genetics professionals had previously voiced concerns about making extremely difficult ethical decisions, with profound implications, in something of a vacuum. Professionals saw a lack of guidance in the (...) area and lack of time for discussion of difficult cases as reasons for this. This paper describes the origins of the group and gives (anonymized) examples of some of the types of issues discussed. (shrink)

Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations, and use recent advances in genomic healthcare as an example. We suggest that practitioners and (...) organisations charged with delivering innovative and ambitious healthcare programmes can only succeed if they are able to exhibit the attribute of ethical preparedness. (shrink)

BackgroundBiobanks and biomedical research data repositories collect their samples and associated data from volunteer participants. Their aims are to facilitate biomedical research and improve health, and they are framed in terms of contributing to the public good. Biobank resources may be accessible to researchers with commercial motivations, for example, researchers in pharmaceutical companies who may utilise the data to develop new clinical therapeutics and pharmaceutical drugs. Studies exploring citizen perceptions of public/private interactions associated with large health data repositories/biobanks indicate that (...) there are sensitivities around public/private and/or non-profit/profit relationships and international sample and data sharing. Less work has explored how biobanks communicate their public/private partnerships to the public or to their potential research participants. MethodsWe explored how a biobank’s aims, benefits and risks, and private/public relationships have been framed in public facing recruitment documents.ResultsBiobank documents often communicate their commercial access arrangements but not the detail about what these interactions would entail, and how risks and benefits would be distributed to the public.ConclusionWe argue that this leads to a polarised discourse between public and private entities and/or activities, and fails to attend to the blurred lines between them. This results in a lack of attention to more important issues such as how risks and benefits in general are distributed to the public. We call for a nuanced approach that can contribute to the much-needed dialogue in this space. (shrink)

We thank Parker and Wright for engaging in this roundtable debate in such a spirited way. The ‘Pharmacogenetic [test] to Avoid Loss of Hearing’ Trial is the first time a genetic point of care test has been applied in the acute neonatal setting; therefore, it is not surprising that questions have been raised which require debate, discussion and clarification. Parker and Wright misattribute several assumptions to the roundtable authors, which we would like to clarify here. Since they raise wider questions (...) about the PALOH trial itself, several of the roundtable discussants have made a joint response. (shrink)

Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the (...) importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices. (shrink)

Working with elders around the world has taught me that those living in grass huts in Africa with children at their feet are often happier than people in assisted‐living homes with a chandelier over their heads. My work in design consultancy and in fifteen years of running a nonprofit, Ibasho, that aims to co‐create socially integrated and sustainable communities that value their elders has allowed me to learn much about how architects and designers can contribute to helping people live a (...) good life in late life. People often need supportive services or other adaptations as they age, but do they really need—or want—the luxury environment few are accustomed to? The challenge for architects and designers is not to create a built environment whose carefully curated facades hide lives of quiet desperation. It is to help elders access the support they need without upending their lives or severing virtually all ties to their communities. (shrink)

In recounting some of the key sociological insights offered by over 30 years of research on emotion management, or emotion regulation, we orient our discussion around sociological answers to the following questions: What is emotion management? How does emotion management occur? Why does it occur? And what are its consequences or benefits? In this review, we argue that emotion and its management are profoundly social. Through daily interactions with others, individuals learn to differentiate which emotions are appropriate when, as well (...) as the most effective ways to bring their feelings in line with culturally agreed-upon emotion norms. Emotion management is also functional, not only for the individuals who perform it, but also for the dyads, groups, institutions, and societies in which they are embedded. The social processes through which individuals learn to display culturally appropriate emotions have important implications on many levels, from interpersonal interactions to the development of social movements. (shrink)

In this round table response, we discuss some of the problems inherent in insisting on specific consent for an activity that needs to happen rapidly as part of a package of care. The Human Tissue Authority consider that specific consent is mandatory to assess which antibiotics are appropriate on the neonatal unit, but this insistence may actually limit the autonomy which consent aims to promote. While genetic testing to determine which child will react adversely to particular antibiotics has been available (...) clinically for several years, the research proposed here is to assess whether improving the speed of testing allows decisions to be made before treatment starts. Insisting on specific consent before this activity can take place is likely to delay appropriate care in some cases. On admission to the neonatal unit, the unwell infant is routinely subjected to a range of investigations and treatments. A person with parental responsibility will usually be asked to provide consent to undertake treatments for children who do not have capacity to give consent themselves.1 For the acutely unwell child, consent will usually be sought for a package of care: the urgent nature of neonatal medicine often requires clinicians to make many decisions without explicit consent. Doctors must always act in a child’s best interests: their decisions need to protect the health and well-being of a child and hold the child’s welfare paramount in accordance with the Children Act and General Medical Council guidelines.1 2 Thus, for example, ventilation might be initiated, sedation provided, antibiotics commenced or diagnostic investigations requested without separate consent conversations or …. (shrink)

This booklet is the first in a series of publications called Briefings in Bioethics by the Progress Educational Trust (PET) charity. Funding from the Department of Health has facilitated the series, which aims to cover a range of ethical issues in biomedicine. Designer Myths is written by the trust's communications officer, Kay Chung, and examines the scientific, legal and ethical issues arising from preimplantation genetic diagnosis (PGD). With advances in the ability to test for a growing number of specific genetic (...) diagnoses and developments of …. (shrink)

Gyngell and colleagues consider that the recent Nuffield Council report does not go far enough: heritable genome editing is not just justifiable in a few rare cases; instead, there is a moral imperative to undertake it. We agree that there is a moral argument for this, but in the real world it is mitigated by the fact that it is not usually possible to ensure a better life. We suggest that a moral imperative for HGE can currently only be concluded (...) if one first buys into an overly deterministic view of a genome sequence, and the role of variation within in it, in the aetiology of the disease: most diseases cannot simply be attributed to specific genetic variants that we could edit away. Multiple, poorly understood genetic and environmental factors interact to influence the expression of diseases with a genetic component, even well understood ‘monogenic’ disorders. Population-level genome analyses are now demonstrating that many genetic ’mutations' are much less predictive than previously thought 1. Furthermore, HGE might introduce new risks just as it reduces old ones; or remove protections not yet clearly delineated. (shrink)

From ancient times, western civilization has been driven by a trust in scientific progress. Is Science Biology and biogenetics promise spectacular advances, mathematics unfolds new areas of understanding. This work explores some of the possible consequences for society and for the future of science itself.".

The past few decades have seen patient autonomy ascend to a prime position in health care. Patient consent is seen as a key component to expression of autonomy. Yet, interventions may also be justified without consent because they are deemed to be in the public interest. We observe some subtle shifts in balance in these justifications in health care and illustrate these with a range of examples. We hope thereby to stimulate a more explicit debate so that health-care professionals can (...) manage these competing interests. (shrink)

In her paper, Galasso contends that transitioning precision medicine from its current emphasis on healthcare benefits, to a focus on precision public health, may help address the equity concerns th...

This booklet is the first in a series of publications called Briefings in Bioethics by the Progress Educational Trust (PET) charity. Funding from the Department of Health has facilitated the series, which aims to cover a range of ethical issues in biomedicine. Designer Myths is written by the trust's communications officer, Kay Chung, and examines the scientific, legal and ethical issues arising from preimplantation genetic diagnosis (PGD). With advances in the ability to test for a growing number of specific genetic (...) diagnoses and developments of …. (shrink)

Magnetoencephalography (MEG) and electroencephalography (EEG) are invaluable neuroscientific tools for unveiling human neural dynamics in three dimensions (space, time, and frequency), which are associated with a wide variety of perceptions, cognition, and actions. MEG/EEG also provides different categories of neuronal indices including activity magnitude, connectivity, and network properties along the three dimensions. In the last 20 years, interest has increased in inter-regional connectivity and complex network properties assessed by various sophisticated scientific analyses. We herein review the definition, computation, short history, (...) and pros and cons of connectivity and complex network (graph-theory) analyses applied to MEG/EEG signals. We briefly describe recent developments in source reconstruction algorithms essential for source-space connectivity and network analyses. Furthermore, we discuss a relatively novel approach used in MEG/EEG studies to examine the complex dynamics represented by human brain activity. The correct and effective use of these neuronal metrics provides a new insight into the multi-dimensional dynamics of the neural representations of various functions in the complex human brain. (shrink)

This book compares the respective concepts of the law of nations put forward by the Spanish theologian Francisco Suárez and by the Dutch jurist Hugo Grotius. This comparison is based on the fact that both thinkers developed quite similar notions and were the first to depart from the Roman conception, which persisted throughout the entire Middle Ages and the early Renaissance. In Rome, jus gentium was a law that applied to foreigners within the Empire, and one which was often mistaken (...) for Natural Law itself. These two features can be found even in the works of writers such as Francisco de Vitória and Alberico Gentili. In Suárez and Grotius, the law of nations is applicable to an extra-national domain and inarguably becomes positive law. Yet, it also contains an ethical element that prevents it from transforming into a mere reflection of state interests. This work argues that this resemblance is hardly a coincidence: Grotius has read Suárez, and that influence has modified the foundations of his early thoughts on jus gentium. This should not be taken to imply that the Dutch jurist wasn't original: in both authors, the definition of the law of nations pursues his own internal logic. Nevertheless, Suárez's oeuvre allowed Grotius to solve a fundamental problem touched on in his early writings that had remained unanswered. Accordingly, his oeuvre promises to clarify one of the most significant moments in the History of International Law. (shrink)