With pre-implantation genetic diagnosis (PGD), genetic testing and selective transfer of embryos is possible. In the future, germ-line gene therapy (GLGT) applied to embryos before implantation, in order to introduce missing genes or replace mutant ones, may be possible. The objective of this dissertation is to analyse moral aspects of these technologies, as described by eighteen British, Italian and Swedish gynaecologists and geneticists. The objective is systematised into three parts: research interviews and qualitative analysis, philosophical analysis, (...) and elaboration of a framework that supports the combination of analytic methods. PGD was described as positive since it enabled some couples at risk for a genetic disease to have a child without the disease. PGD was described as in different senses ‘better’ than methods for prenatal diagnosis and selective termination of pregnancy. It was also described as positive since it provided couples at risk with one more option, even if it did not result in the birth of a healthy child. However, interviewees were concerned about the difficulty of defining and evaluating genetic disease. They were also concerned about patients’ choices, and about exaggerated use or misuse. Whereas PGD gave rise to ambivalence in terms of how to understand, describe and evaluate it, GLGT was often described as unrealistic or undesirable. The results of the qualitative analysis are used in a philosophical analysis of the concepts of choice, autonomous choice, ambivalence, trust and ambivalence in trust relations. A set of distinct characteristics of each concept are elaborated. The results of the philosophical analysis are used in the discussion of the results of the qualitative analysis. The study shows that the technologies imply both ‘new’ ways to perform ‘old’ medical practices and ‘new’ practices. Old moral questions are reformulated. New moral questions are added. Against the background of this, the concept of genetic identity is discussed. Key words: empirical ethics, pre-implantation genetic diagnosis, germ-line gene therapy, qualitative research, philosophical analysis, medical progress, genetic disease, choice, autonomous choice, ambivalence, trust, genetic identity. (shrink)

CRISPR is currently viewed as the central tool for future gene therapy. Yet, many prominent scientists and bioethicists have expressed ethical concerns around CRISPR gene therapy. This paper provides a critical review of concerns about CRISPR gene therapy as expressed in the mainstream academic literature, paired with replies also generally found in that literature. The expressed concerns can be categorised into three types depending on whether they stress risk/benefit ratio, autonomy and informed consent, (...) or concerns related to various aspects of justice. In the reviewed literature, we found no intrinsic objections to CRISPR gene therapy, even though many such objections were present in discussions of gene editing in the 1990s. The paper then proposes a brief outline for a practically applicable moral framework for public decision-making about CRISPR gene therapy and suggests how such a framework might be supported. We also suggest that this framework should govern public engagement about CRISPR gene therapy in order to reduce the risk that we make decisions about CRISPR gene therapy based on misperceptions, inflated views of risk, or unreasonable moral or religious views. (shrink)

Gene therapy and gene editing are revolutionising the treatment of genetic diseases, most notably haematological disorders. This paper evaluates the use of both techniques in hereditary blood disorders. Many studies have been conducted in this field, especially with gene therapy, with very promising results in diseases such as haemophilia, certain haemoglobinopathies and Fanconi anaemia. The application of these techniques in clinical practice and the foreseeable development of these approaches in the coming years suggest that it (...) might be useful to evaluate the results achieved thus far. It is also essential to reflect on the possible bioethical concerns raised by the use of both techniques, especially in terms of safety issues for patients, potential side effects, treatment duration, accessibility and cost of treatment, and the heritability of genetic changes produced if germline cells are used. (shrink)

Advances in genetic technology in general and medical genetics in particular will enable us to intervene in the process of human biological development which extends from zygotes and embryos to people. This will allow us to control to a great extent the identities and the length and quality of the lives of people who already exist, as well as those we bring into existence in the near and distant future. Genes and Future People explores two general philosophical questions, one metaphysical, (...) the other moral: (1) How do genes, and different forms of genetic intervention (gene therapy, genetic enhancement, presymptomatic genetic testing of adults, genetic testing of preimplantation embryos), affect the identities of the people who already exist and those we bring into existence? and (2) How do these interventions benefit or harm the people we cause to exist in the near future and those who will exist in the distant future by satisfying or defeating their interest in having reasonably long and disease-free lives? Genes and Future People begins by explaining the connection between genes and disease, placing genetic within a framework of evolutionary biology. It then discusses such topics as how genes and genetic intervention influence personal identity, what genetic testing of individuals and the knowledge resulting from it entails about responsibility to others who may be at risk, as well as how gene therapy and genetic enhancement can affect the identities of people and benefit or harm them. Furthermore, it discusses various moral aspects of cloning human beings and body parts. Finally, it explores the metaphysical and moral implications of genetic manipulation of the mechanisms of aging to extend the human life span.The aim Genes and Future People is to move philosophers, bioethicists, and readers in general to reflect on the extent to which genes determine whether we are healthy or diseased, our identities as persons, the quality of our lives, and our moral obligations to future generations of people. (shrink)

Abstract:Highly immersive virtual reality (VR) systems have been introduced into the consumer market in recent years. The improved technological capabilities of these systems as well as the combination with biometric sensors, for example electroencephalography (EEG), in a closed-loop hybrid VR-EEG, opens up a range of new potential medical applications. This article first provides an overview of the past and current clinical applications of VR systems in neurology and psychiatry and introduces core concepts in neurophilosophy and VR research (such as agency, (...) trust, presence, and others). Then, important adverse effects of highly immersive VR simulations and the ethical implications of standalone and hybrid VR systems for therapy in neurology and psychiatry are highlighted. These new forms of VR-based therapy may strengthen patients in exercising their autonomy. At the same time, however, these emerging systems present ethical challenges, for example in terms of moral and legal accountability in interactions involving “intelligent” hybrid VR systems. A user-centered approach that is informed by the target patients’ needs and capabilities could help to build beneficial systems for VR therapy. (shrink)

Is inheritable genetic modification the new dividing line in gene therapy? The editors of this searching investigation, representing clinical medicine, public health and biomedical ethics, have established a distinguished team of scientists and scholars to address the issues from the perspectives of biological and social science, law and ethics, including an intriguing Foreword from Peter Singer. Their purpose is to consider how society might deal with the ethical concerns raised by inheritable genetic modification, and to re-examine prevailing (...) views about whether these procedures will ever be ethically and socially justifiable. The book also provides background to define the field, and discusses the biological and technological potential for inheritable genetic modification, its limitations, and its connection with gene therapy, cloning, and other reproductive interventions. For scientists, bioethicists, clinicians, counsellors and public commentators, this is an essential contribution to one of the critical debates in current genetics. (shrink)

The ability of medical science to clone and perhaps even predetermine characteristics of certain species conflicts dramatically with many claims of the religious establishment. Opening with a description of various developments in plant, animal, and human genetics, Made in Whose Image? highlights the progress genetic research has achieved, its future promise, and its social impact. The developments are analyzed from the perspective of Christian ethics, as expounded by Roman Catholic and Protestant theorists, to give an overview of crucial ethical (...) issues. In reviewing the advances of genetic research, noted religion and ethics professor Thomas A. Shannon covers general ethical themes, such as the value of life, materialism, freedom, individuality, the concept of nature, and health and disease. In addition, he discusses problems in genetic engineering and misconceptions of the church. Shannon explores prenatal diagnosis, gene therapy, genes and behavior, freedom and responsibility, and the Human Genome Project. The book concludes with a powerful and groundbreaking methodological discussion of how to approach ethical problems in genetic engineering. (shrink)

Should we make people healthier, smarter, and longer-lived if genetic and medical advances enable us to do so? Matti Häyry asks this question in the context of genetic testing and selection, cloning and stem cell research, gene therapies and enhancements. The ethical questions explored include parental responsibility, the use of people as means, the role of hope and fear in risk assessment, and the dignity and meaning of life. Taking as a starting point the arguments presented by Jonathan (...) Glover, John Harris, Ronald M. Green, Jürgen Habermas, Michael J. Sandel, and Leon R. Kass, who defend a particular normative view as the only rational or moral answer, Matti Häyry argues that many coherent rationalities and moralities exist in the field, and that to claim otherwise is mistaken"--Provided by publisher. (shrink)

Reflexión sobre los problemas éticos que plantea la aplicación de la ingeniería genética a los seres humanos, con la intención de conducir a la toma de decisiones prudentes en su utilización.

Gene therapy research and its clinical application raise a large number of ethical, legal, and social questions. Many of these are discussed in Nordgren's anthology. The contributions come from a number of different disciplines, including bioethics, genetics, social science, and theology. The book is divided into five main sections (following a short introduction): scientific aspects of gene therapy; the history of, and prospects for, gene therapy; conceptual issues; gene therapy in (...) a German and Japanese context, and a section on the uses of gene therapy in relation to, for example, testing and screening. The contributions are quite diverse and mostly well worth reading. From the perspective of medical ethics the contributions by LeRoy Walters, Eric Juengst, Karen Lebacqz, Nikolaus Knoepffler, and Christian Munthe are of particular interest. Walters's contribution focuses in part on the issue of …. (shrink)

Any suggestion of altering the genetic makeup of human beings through gene therapy is quite likely to provoke a response involving some reference to a 'slippery slope'. In this article the author examines the topography of two different types of slippery slope argument, the logical slippery slope and the rhetorical slippery slope argument. The logical form of the argument suggests that if we permit somatic cell gene therapy then we are committed to accepting germ line (...) class='Hi'>gene therapy in the future because there is no logically sustainable distinction between them. The rhetorical form posits that allowing somatic cell therapy now will be taking the first step on a slippery slope which will ultimately lead to the type of genocide perpetrated by the Nazis. The author tests the validity of these lines of argument against the facts of human gene therapy and concludes that because of their dependence on probabilities that cannot be empirically proven they should be largely disregarded in the much more important debate on moral line-drawing in gene therapy. (shrink)

Medicine in the twenty-first century is increasingly reliant on research to guarantee the safety and efficacy of medical interventions. As a result, the need to understand the ethical issues that research generates is becoming essential. This volume introduces the principal areas of concern in research on human subjects, offering a framework for understanding research ethics, and the relationship between ethics and compliance. Research Ethics brings together leading scholars in bioethics and the topics covered include the unique concerns that arise (...) in specific areas of research such as gene therapy and stem cell research. Individual chapters also address the ethical issues that arise when conducting research with specific populations such as infants or adolescents, and the volume looks at important emerging issues in human subjects research, namely financial conflicts of interest and the interpretation of scientific data. (shrink)

This paper reports on the meeting of the Sounding Board of the EU Reprogenetics Project that was held in Budapest, Hungary, 6–9 November 2005. The Reprogenetics Project runs from 2004 until 2007 and has a brief to study the ethical aspects of human reproductive cloning and germline gene therapy. Discussions during The Budapest Meeting are reported in depth in this paper as well as the initiatives to involve the participating groups and others in ongoing collaborations with (...) the goal of forming an integrated network of European resources in the fields of ethics of science. (shrink)

The prelims comprise: Introduction A (re)Defmition of what Human Gene Therapy is About Neurological Gene Therapy Ethics and Gene Therapy Acknowledgments Notes.

As the potential for the first human trials of somatic cell gene therapy nears, two ethical issues are examined: (1) problems of moral choice for members of institutional review boards who consider the first protocols, for parents, and for the clinical researchers, and the special protections that may be required for the infants and children to be involved, and (2) ethical objections to somatic cell therapy made by those concerned about a putative inevitable progression (...) of genetic knowledge from therapy to mass genetic engineering in human reproduction. The author's viewpoint is that a consensus exists on the required moral approach to somatic cell therapy, but that no moral approach yet exists for experiments beyond this level, especially in the germline cells of human beings. Keywords: gene therapy, somatic cells, germ cells, institutional review boards, genetic engineering CiteULike Connotea Del.icio.us What's this? (shrink)

This book provides a worthwhile and challenging introduction to scientific and moral issues in germline gene therapy. It contains two parts, dealing with scientific and moral issues respectively. In the first, scientific part, a chapter on what the alternatives to germline therapy are is helpful, especially in pointing out that many of the goals one might want to achieve by using germline therapy may be achieved, at a slighter risk, by using non-genetic technologies such (...) as selective embryo implantation and selective abortion. However, the authors argue that germline therapy may be an option in certain cases in which these alternatives are not viable (page 72). In the second part of the book, moral and political issues in germline therapy are discussed, such as the distinction between therapy and enhancement, potential benefits and harms, rights and responsibilities, justice, our concept of humanness, and public policy issues. The …. (shrink)

In the debate regarding the different possibilities for gene therapy, it is presupposed that the manipulations are limited to the nuclear genome (nDNA). Given recent advances in genetics, mitochondrial genome (mtDNA) and diseases must be considered as well. In this paper, we propose a three dimensional framework for the ethical debate of gene therapy where we add the genomic type (nDNA vs. mtDNA) as a third dimension to be considered beside the paradigmatic dimensions of target (...) cell (somatic vs. germ-line) and purpose (therapeutic vs. enhancement). Somatic gene therapy can be viewed today as generally accepted, and we review t he contemporary arguments surrounding it on the basis of bioethical-pragmatic, socio-political and deontological classifications. Many of the supposed ethical questions of somatic gene therapy today are not new; they are well-known issues of research ethics. We also critically summarize the different international perspectives and the German ethical discussion regarding manipulations of germ-line cells. (shrink)

Recent political developments and disclosures of serious adverse events in human gene therapy (HGT) with the death of 18‐year old Jesse Gelsinger in the USA have shown that the clinical application of HGT raises some severe ethical issues. These have either been neglected or not yet been discussed to a satisfactory extent. In this paper, we will address this deficiency and develop strategies for a safer application of HGT. Such a study must first look closely at the (...) science of HGT itself. We will evaluate the latest preclinical research, especially data on the viruses that are used as vectors and on modes of administration of vectors. We will put forward new arguments concerning the toxicity assessment of so‐called ‘gene drugs‘, the tissue and cell type specificity of the vectors, and the duration and on‐set of gene expression. Secondly, we will look at procedural aspects of applied research ethics on the way to clinical application of HGT. There, informed consent (IC) and the patient‐researcher relationship are of utmost concern. Furthermore, we will explore the problem of expertise in risk assessment and will show how current regulations foster conflicts of interests that create dilemma situations even for those researchers who act in the best interest of the patients. We will conclude the article with a set of questions for ethicists who have to decide about the quality of HGT protocols. This may contribute to the safety of patients participating in HGT trials and to achieving the aim of efficient application of HGT. (shrink)

Despite widespread agreement that it would be ethical to use somatic cell gene therapy to correct serious diseases, there is still uneasiness on the part of the public about this procedure. The basis for this concern lies less with the procedure's clinical risks than with fear that genetic engineering could lead to changes in human nature. Legitimate concerns about the potential for misuse of gene transfer technology justify drawing a moral line that includes corrective germline (...) therapy but excludes enhancement interventions in both somatic and germline contexts. Keywords: somatic cell, germ line, genetic diseases, genetic engineering, humanness, enhancement, eugenics CiteULike Connotea Del.icio.us What's this? (shrink)

Somatic cell gene therapy has yielded promising results. If germ cell gene therapy can be developed, the promise is even greater: hundreds of genetic diseases might be virtually eliminated. But some claim the procedure is morally unacceptable. We thoroughly and sympathetically examine several possible reasons for this claim but find them inadequate. There is no moral reason, then, not to develop and employ germ-line gene therapy. Taking the offensive, we argue next that medicine (...) has a prima facie moral obligation to do so. (shrink)

Large-scale, interoperable biobanks are an increasingly important asset in today's life science research and, as a result, multiple types of biobanks are being established around the globe with very different financial, organizational and legal set-ups. With interdisciplinary chapters written by lawyers, sociologists, doctors and biobank practitioners, Global Genes, Local Concerns identifies and discusses the most pressing issues in contemporary biobanking.This timely book addresses pressing questions such as: how do national biobanks best contribute to translational research?; What are the opportunities and (...) challenges that current regulations present for translational use of biobanks?; How does inter-biobank coordination and collaboration occur on various levels?; and how could academic and industrial exploitation, ownership and IPR issues be addressed and facilitated? Identifying that biobanks' foundational and operational set-ups should be legally and ethically sound, while at the same time reflecting the hopes and concerns of all the involved stakeholders, this book contributes to the continued development of international biobanking by highlighting and analysing the complexities in this important area of research.Academics in the fields of law and ethics, health law and biomedical law, as well as biobank managers and policymakers will find this insightful book a stimulating and engaging read. (shrink)

This open peer commentary critiques Cwik's approach to categorizing germline gene editing interventions. The authors argue that Cwik's framework, which prioritizes technical categories and dimensions to map the "ethical terrain," is fundamentally flawed by putting the technical aspects before ethical considerations. They identify four key problems with his approach: it is arbitrary in its categorizations, relies on dynamic membership that changes with scientific knowledge, requires extensive technical expertise that many bioethicists lack, and most importantly, approaches the (...) analysis "back-to-front" by starting with technical rather than ethical distinctions. The authors argue that ethical assessment should begin with examining the goals and justifications of an intervention, rather than its technical specifications. They use the example of mitochondrial replacement therapy to illustrate how classification should proceed from ethical considerations to technical ones, not vice versa. The commentary concludes that while Cwik offers a complex framework, it is both incorrectly structured and impractical to use consistently. (shrink)

types of application of genetic engineering for the insertion of genes into humans. The scientific requirements and the ethical issues associated with each type are discussed. Somatic cell gene therapy is technically the simplest and ethically the least controversial. The first clinical trials will probably be undertaken within the next year. Germ line gene therapy will require major advances in our present knowledge and it raises ethical issues that are now being debated. In order (...) to provide guidelines for determining when germ line gene therapy would be ethical, the author presents three criteria which should be satisfied prior to the time that a clinical protocol is attempted in humans. Enhancement genetic engineering presents significant, and troubling, ethical concerns. Except where this type of therapy can be justified on the grounds of preventive medicine, enhancement engineering should not be performed. The fourth type, eugenic genetic engineering, is impossible at present and will probably remain so for the foreseeable future, despite the widespread media attention it has received. Keywords: genetic engineering, somatic cells, germ cells, enhancement, eugenics, humanhood CiteULike Connotea Del.icio.us What's this? (shrink)

With the advent of CRISPR gene-editing technology, designer babies have become a reality. Françoise Baylis insists that scientists alone cannot decide the terms of this new era in human evolution. Members of the public, with diverse interests and perspectives, must have a role in determining our future as a species.

The authors find it more useful to payattention to relationships than to boundaries.By focusing attention on bounded, individualpsychological issues, the metaphor ofboundaries can distract helping professionalsfrom thinking about inequities of power. Itoversimplifies a complex issue, inviting us toignore discourses around gender, race, class,culture, and the like that support injustice,abuse, and exploitation. Making boundaries acentral metaphor for ethical practice can keepus from critically examining the effects ofdistance, withdrawal, and non-participation.The authors describe how it is possible toexamine the practical, moral, (...) and ethicaleffects of our participation in relationshipsby focusing on just relationships rather thanon boundaries. They give illustrations andclinical examples of relationally-focusedethical practices that derive from a narrativeapproach to therapy. (shrink)

Today, advances in medicine and biotechnology occur at a rapid pace and have a profound impact on our lives. Mechanical devices can sustain an injured person's life indefinitely. Computed tomography (CT) and magnetic resonance imaging (MRI) scans of the body and brain can reveal disorders before symptoms appear. Genetic testing of embryos can predict whether people will have diseases earlier or later in life. It may even become possible to clone human beings. These and other developments raise difficult ethical (...) questions. Biomedical Ethics is an engaging philosophical introduction to the most important ethical positions and arguments in six areas of biomedicine: the patient-doctor relationship, medical research on humans, reproductive rights and technologies, genetics, medical decisions at the end of life, and the allocation of scarce medical resources. Concisely capturing the historical, contemporary, and future-oriented aspects of the field, author Walter Glannon discusses both perennial issues in medicine, such as doctors' duties to patients, and recent and emerging issues in scientific innovation, including gene therapy and cloning. Ideal for undergraduate courses in contemporary moral problems, introduction to ethics, and introduction to bioethics, Biomedical Ethics is accessible to students who have little or no background in ethical theory, medicine, or biotechnology. (shrink)

Nanotechnology is an important platform technology which will add new features like improved biocompatibility, smaller size, and more sophisticated electronics to neuro-implants improving their therapeutic potential. Especially in view of possible advantages for patients, research and development of nanotechnologically improved neuro implants is a moral obligation. However, the development of brain implants by itself touches many ethical, social and legal issues, which also apply in a specific way to devices enabled or improved by nanotechnology. For researchers developing nanotechnology (...) such issues are rather distant from their daily work in the lab, but as soon as they use their materials or devices in medical applications such as therapy of brain diseases they have to be aware of and deal with them. This paper is intended to raise sensitivity for the ethical, legal and social aspects (ELSA) involved in applying nanotechnology in brain implants or other devices by highlighting the short term problems of testing and clinical trials within the existing regulatory frameworks (A), the short and medium-term questions of risks in the application of the devices (B) and the long-term perspectives related to problems of enhancement (C). To identify and address such issues properly nanotechnologists should involve ethical, legal and social experts and regulatory bodies in their research as early as possible. This will help to remove pressure from regulatory bodies, to settle public concern and to prevent non-acceptable developments for the benefit of the patients. (shrink)

The article considers the issues of modern German political philosophy in accordance with its formation, institutionalization and development. Germany’s political philosophy is analyzed in terms of its interaction with social and practical philosophy. The text states that political philoso- phy belongs to both social philosophy and political science. As a political theory, it is a compo- nent of social theories institutionalized in the modern era. As a political philosophy, it appears as a metatheory of political theory. Political philosophy is also (...) part of practical philosophy, exploring the problems of interaction between ethics and politics and the moral reclamation of the political system of modern society. These issues are themed in the context of the institution- alization of this discipline in the early twentieth century, its transformation into a political reli- gion during National Socialism, the revival after World War II, as well as actualization in such areas of socio-humanitarian sciences as discourse philosophy, functional-system theory of so- ciety, etc. according to the political situation of modern Germany. (shrink)

Someday soon (if it hasn't happened in secret already), a human will be cloned, and mankind will embark on a scientific and moral journey whose destination cannot be foretold. In Copycats: The Science and Ethics of Cloning, Arlene Judith Klotzko describes the new world of possibilities that can be glimpsed over the horizon. In a lucid and engaging narrative, she explains that the technology to create clones of living beings already exists, inaugurated in 1996 by Dolly the sheep, the (...) first mammal cloned from a single adult cell. Dolly is the culmination of a long scientific quest to understand the puzzle of our development from one cell into a complex organism--the outcome of a "fantastic experiment" envisioned six decades before her birth. Scientists have since cloned mice, cows, goats, pigs, rabbits and cats. Using the same laboratory tools and techniques, they are trying to grow an embryo, cloned from a single cell of a human being. Their goal is not to make copies of existing people, but to design therapies for currently untreatable diseases and the afflictions of old age. Our fascination with cloning is about much more than science and its extraordinary medical implications. In riveting prose, full of illusions to art, music and the cinema, Klotzko shows why the prospect of human cloning triggers our dearest hopes and especially our darkest fears, forcing us to ponder anew what it means to be human. And what it would be like to have "a clone of your own.". (shrink)

Ethics and Values in Psychotherapy examines the ways in which the ethical convictions of both therapist and client contribute to the practical process of psychotherapy. Practitioners are increasingly focusing on the issue of their extensive--and often problematic--ethical influence on clients as they attempt to agree on guidelines and standards for professional practice. Alan C. Tjeltveit argues that any discussion of ethical practice in psychotherapy must be carried out in connection with traditional ethical theories. The author draws (...) on scientific, clinical, and philosophical approaches to address issues such as: the role of therapy in society; the goals and outcomes of psychotherapy; techniques and practices; the existence and operation of values; and the intellectual and social context in which therapy takes place. This comprehensive study is a significant contribution to the debate on the ethical character of psychotherapy. (shrink)

Spinal muscular atrophy (SMA) is the most common genetic disease that causes infant mortality. Its treatment and prevention represent the paradigmatic example of the ethical dilemmas of 21st‐century medicine. New therapies (nusinersen and AVXS‐101) hold the promise of being able to treat, but not cure, the condition. Alternatively, genomic analysis could identify carriers, and carriers could be offered in vitro fertilization and preimplantation genetic diagnosis. In the future, gene editing could prevent the condition at the embryonic stage. How (...) should these different options be evaluated and compared within a health system? In this paper, we discuss the ethical considerations that bear on the question of how to prioritize the different treatments and preventive options for SMA, at a policy level. We argue that despite the tremendous value of what we call ‘ex‐post’ approaches to treating SMA (such as using pharmacological agents or gene therapy), there is a moral imperative to pursue ‘ex‐ante’ interventions (such as carrier screening in combination with prenatal testing and preimplantation genetic diagnosis, or gene editing) to reduce the incidence of SMA. There are moral reasons relating to autonomy, beneficence and justice to prioritize ex‐ante methods over ex‐post methods. (shrink)

In the last decade, fierce controversy has arisen over the nature of sexual orientation. Scientific research, religious views, increasingly ambiguous gender roles, and the growing visibility of sexual minorities have sparked impassioned arguments about whether our sexual desires are hard-wired in our genes or shaped by the changing forces of society. In recent years scientific research and popular opinion have favored the idea that sexual orientations are determined at birth, but philosopher and educator Edward Stein argues that much of what (...) we think we know about the origins of sexual desire is probably wrong. Stein provides a comprehensive overview of such research on sexual orientation and shows that it is deeply flawed. Stein argues that this research assumes a picture of sexual desire that reflects unquestioned cultural stereotypes rather than cross-cultural scientific facts, and that it suffers from serious methodological problems. He considers whether sexual orientation is even amenable to empirical study and asks if it is useful for our understanding of human nature to categorize people based on their sexual desires. Perhaps most importantly, Stein examines some of the ethical issues surrounding such research, including gay and lesbian civil rights and the implications of parents trying to select or change the sexual orientation of their children. The Mismeasure of Desire offers a reasoned, accessible, and incisive examination of contemporary thinking about one of the most hotly debated issues of our time and adds a compelling voice of dissent to prevailing--and largely unexamined--assumptions about human sexuality. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision‐making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects.In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

The classification of techniques used in mitochondrial donation, including their role as purported germ-line gene therapies, is far from clear. These techniques exhibit characteristics typical of a variety of classifications that have been used in both scientific and bioethics scholarship. This raises two connected questions, which we address in this paper: how should we classify mitochondrial donation techniques?; and what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ-line gene (...) therapy, are typically defined or classified. We then consider whether techniques of mitochondrial donation fit into these, whether they might do so with some refinement of these categories, or whether they require some other approach to classification. To answer the second question, we discuss the relationship between classification and several key ethical issues arising from mitochondrial donation. We conclude that the properties characteristic of mitochondrial inheritance mean that most mitochondrial donation techniques belong to a new sub-class of genetic modification, which we call ‘conditionally inheritable genomic modification’. (shrink)

Human germline gene editing is often debated in hypothetical terms: if it were safe and efficient, on what further conditions would it then be ethically acceptable? This paper takes another course. The key question is: how can scientists reduce uncertainty about safety and efficiency to a level that may justify initiation of first-time clinical trials? The only way to proceed is by well-designed preclinical studies. However, what kinds of investigation should preclinical studies include and what specific conditions should they (...) satisfy in order to be considered well-designed? It is argued that multispecies and multigenerational animal studies are needed as well as human embryo editing without implantation. In order to be possible to translate to first-time clinical trials, animal studies need to satisfy strict conditions of validity. Moreover, embryo studies intended for translation to first-time clinical trials need to correspond to the animal studies in experimental design. Only in this way can uncertainty about risk for harm and prospect of benefit in first-time clinical trials be reduced to a modest level. If uncertainty is not reduced to such a level, first-time clinical trials in germline gene editing should not be initiated. (shrink)

In Morality and Ethics of War, which includes a foreword by Major General Susan Coyle, ethicist Deane-Peter Baker goes beyond existing treatments of military ethics to address a fundamental problem: the yawning gap that exists between the diverse moral frameworks defining personal identity in a multicultural society on the one hand, and the professional military ethic on the other. Baker argues that overcoming this chasm is essential to minimising the ethical risks that can lead to operational and strategic (...) failure for military forces engaged in today's complex conflict environment. He contends that spanning the gap is vital in preventing moral injury from befalling the nation's uniformed servants. Drawing on a revised account of what he calls 'the Just War Continuum', Baker develops a bridging framework that combines conceptual clarity and rigour with insights from cutting edge psychological research and creates a practical means for military leaders to negotiate the moral chasm in military affairs. (shrink)

Psychotherapy helps one enact ideas about a good life, and therapists practice orientations rooted in their chosen approach. A 'good life' can therefore mean different things depending on the therapy. Building on the philosophy of Charles Taylor, Smith examines the link between therapy, ethics and the root of therapeutic views in comparison to modern, Western ideas about 'living well'. This is one of two complementary volumes. This volume builds on the last to explore what it means to engage (...) the different ethics of different therapies by offering a deeper explication of therapeutic ethics. Utilizing Taylor's work on practical reasoning, Smith explores topics like the nature of the ethical argument, the role of ethical intuitions and the value of framing ethical debate as ongoing dialogue. He applies this to therapeutics ethics to show how vital it is to consider the ethical proposals that are present in current theories and practices in order to understand the psychotherapies. A key text for upper level undergraduate, postgraduate students and professionals in the field of psychotherapy, psychoanalysis, theoretical psychology and philosophy of the mind. (shrink)

Since the birth of the first test-tube baby, Louise Brown, in 1977, we have seen truly remarkable advances in biotechnology. We can now screen the fetus for Down Syndrome, Spina Bifida, and a wide range of genetic disorders. We can rearrange genes in DNA chains and redirect the evolution of species. We can record an individual's genetic fingerprint. And we can potentially insert genes into human DNA that will produce physical warning signs of cancer, allowing early detection. In fact, biotechnology (...) has progressed to such a point that virtually any kind of genetic manipulation, if not already possible, is just around the corner. But these breakthroughs also raise serious ethical and moral dilemmas that we are only now beginning to confront. In Wonderwoman and Superman, noted medical ethicist John Harris offers the first thorough analysis of the moral dilemmas created by the revolution in molecular biology. Covering a wide array of recent innovations, Harris discusses, for example, the moral decisions involved and the consequences of creating egg and embryo banks. Who should be allowed to use such resources? Should recipients be screened? Should such banks be open for public or private use? And does it cheapen life to make embryos available for sale? In another chapter, Harris examines the question of conceiving children chiefly for organ donation, focusing on the recent case of a woman who wanted to have a second child to provide a bone marrow donor for her first child sick with leukemia (she intended to abort the fetus if its bone marrow did not genetically match that of her living child). In this case, the medical staff had to decide whether they should perform in-vitro fertilization, knowing that the mother did not satisfy the clinic's criteria (there was no father), and also knowing the potential for abortion. Discussing the ethics of the mother's choice and the clinic's choice, Harris asks whether it is morally correct to create a child as an organ donor, whether the future child would suffer, whether it is worth any suffering to be born, and who has the right to weigh the various factors (both moral and physiological) involved in making these decisions. Delving into a multitude of issues such as when life begins, when suffering is needless, and whether we should play God, Wonderwoman and Superman provides not only a thought-provoking inquiry into the potential and actual ethical dilemmas created by the many advances in biotechnology, but challenges us to learn to choose responsibly and to face the moral implications of the choices that confront us. (shrink)

Transhumanism : in a nutshell -- On a silicon-based transhumanism -- On a carbon-based transhumanism -- A fictive ethics -- The end of the beginning.

Testicular tissue cryopreservation aims to preserve the future option of genetic reproduction for prepubescent cancer patients who are at risk of infertility as a result of their cancer therapies. This technology is experimental and currently only offered in the research context. As TTCP moves towards becoming more widely available, it is imperative that healthcare providers recognize the complex ethical issues surrounding this technology. This scoping review study identifies and assesses the range and depth of ethical concerns related to (...) this testicular tissue cryopreservation technology. At present, no such scoping review of ethical concerns exists in the TTCP literature. The forty-three full-text articles included in this study yielded twenty-two different ethical considerations discussed in relation to TTCP. It was observed that these ethical considerations fit within a mainstream Principlism approach to bioethics. Accordingly, there are ethical gaps in the TTCP literature that can be identified with alternative moral lenses. In particular, it was found that ethical concerns related to context and relational aspects of identity were absent in nearly all ethical examinations of TTCP. Furthermore, only 9 per cent of articles reviewed in this study focused primarily on the ethics of TTCP, thus demonstrating a need for further in depth ethical analyses of this technology. The results of this study are important for supporting the ethical provision of TTCP and can contribute to policy and guideline development. The findings of this study demonstrate the need for greater depth and diversity in analyses of ethical considerations related to this technology. (shrink)

Children and adults with dementia are vulnerable populations. Both groups are also relatively seldom included in biomedical research. However, including them in clinical trials is necessary, since both groups are in need of scientific innovation and new therapies. Their dependence and limited decision-making capacities increase their vulnerability, necessitating extra precautions when including them in clinical trials. Beside these similarities there are also many differences between the groups. The most obvious one is that children have an entire life ahead of them (...) and will become persons with certain ideals and preferences, while adults with dementia have lived a life in which they have expressed their ideals and preferences. Some of the available research guidelines recognize these differences, setting one list of specific requirements for groups of incapacitated adults and another list for children. Other documents, however, do not differentiate and only set requirements for subjects unable to consent as a single category of subjects. In this article we analyse to what extent the similarities and differences between the two groups are represented in legal documents and ethical guidelines. The article presents an overview and an analysis of the requirements for doing research with children and dementia patients. We conclude with suggestions about how to better incorporate the morally relevant aspects of these two groups in legislation and ethical guidelines. (shrink)

Creating Future People offers readers a fast-paced primer on how advances in genetics will enable parents to influence the traits of their children, including their children's intelligence, moral capacities, physical appearance, and immune system. It explains the science of gene editing and embryo selection, and motivates the moral questions it raises by thinking about the strategic aspects of parental choice. Professor Anomaly takes seriously the diversity of preferences parents have, and the limits policymakers face in regulating (...) what will soon be a global market for reproductive technology. Anomaly argues that once embryo selection for complex traits happens it will change the moral landscape by altering the incentives each person faces. All of us will take an interest in the traits everyone else selects, and this will present coordination problems that previous writers on genetic enhancement have failed to consider. Anomaly ends by considering how genetic engineering will transform humanity. Key Updates to the Second Edition · Significant revisions to the Preface and three separate chapters to include more details about what will be scientifically possible in the coming years and the moral issues these developments will raise · New and substantial coverage of embryo selection (guided by polygenic scores) for minimizing the risk of genetic diseases · Engagement with all important, new publications on the science of genetic enhancement. (shrink)

This book offers numerous questions and answers about ethics in counselling and therapy, training, counselling supervision, research and other important issues. The authors bring psychodynamic, person-centred, integrative or eclectic approaches to their selection of questions and answers. They also bring a variety of experience from independent practice, institutional and voluntary agency settings. Between them they have experience as counsellors, psychotherapists, trainers, counselling supervisors and authors. The questions cover a range of issues that practitioners need to consider including: confidentiality, constraints (...) and the management of confidentiality; boundaries, dual and multiple relationships, relationships with former clients; non-discriminatory practice, issues for individuals and agencies; competence and the proper conduct of counsellors and therapists and the profession's responsibilities to deliver non-exploitative and non-abusive help to clients. Questions of Ethics in Counselling and Therapy also contains three appendices offering useful information. It is written in a clear, accessible style and is aimed at a wide readership in counselling and therapy, ranging from trainees to more experienced practitioners. (shrink)

Background: A predictive genetic test for Huntington’s disease can be used before any symptoms are apparent, but there is only sparse knowledge about the long-term consequences of a positive test result. Such knowledge is important in order to gain a deeper understanding of families’ experiences. Objectives: The aim of the study was to describe a young couple’s long-term experiences and the consequences of a predictive test for Huntington’s disease. Research design: A descriptive case study design was used with a longitudinal (...) narrative life history approach. Participants and research context: The study was based on 18 interviews with a young couple, covering a period of 2.5 years; starting 6 months after the disclosure of the test results showing the woman to be a carrier of the gene causing Huntington’s disease. Ethical considerations: Even though the study was extremely sensitive, where potential harm constantly had to be balanced against the benefits, the couple had a strong wish to contribute to increased knowledge about people in their situation. The study was approved by the ethics committee. Findings: The results show that the long-term consequences were devastating for the family. This 3-year period was characterized by anxiety, repeated suicide attempts, financial difficulties and eventually divorce. Discussion: By offering a predictive test, the healthcare system has an ethical and moral responsibility. Once the test result is disclosed, the individual and the family cannot live without the knowledge it brings. Support is needed in a long-term perspective and should involve counselling concerning the families’ everyday life involving important decision-making, reorientation towards a new outlook of the future and the meaning of life. Conclusion: As health professionals, our ethical and moral responsibility thus embraces not only the phase in direct connection to the actual genetic test but also a commitment to provide support to help the family deal with the long-term consequences of the test. (shrink)