This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns.

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and medicine, (...) truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

The book analyses moral and legal problems of assisted reproduction providing a pluralistic approach which combines principles of procreative beneficence, procreative nonmaleficence, reproductive autonomy and rationality with the meaning and nature of the parent-child relationship as the main criterion of moral assessment.

Using the two cases of the Icelandic Health Sector Database and Russian initiatives in biobanking, the article criticizes the view of narratives and imaginaries as a sufficient and unproblematic means of shaping public understanding of genetics and justifying population-wide projects. Narrative representations of national biobanking engage particular imaginaries that are not bound by the universal normative framework of human rights, promote affective thinking, distract the public from recognizing and discussing tangible ethical and socioeconomic issues, and harm (...) trust in science and technology. In the Icelandic case, the presentation of the project in association with national imaginaries concealed its market identity and could lead to the commodification of biodata. In the Russian case, framing in terms of "genetic sovereignty" and "civilizational code" offers pretexts for state securitization. Adherence to normative framework of human rights and public discussion of genetics in an argumentative and factual mode can counter these trends. (shrink)

Human population genetic research (HPGR) seeks to identify the diversity and variation of the human genome and how human group and individual genetic diversity has developed. This book asks whether developing countries are well prepared for the ethical and legal conduct of human population genetic research, with specific regard to vulnerable target group protection. The book highlights particular issues raised by genetic research on populations as a whole, such as the capacity for current (...) frameworks of Western developed countries to provide adequate protections for target groups in human population genetic research, and explores potential groups of people that may suffer harm in this kind of research. Using The People's Republic of China as a key example, Yue Wang argues that since the target groups of HPGR are almost always vulnerable groups from isolated and rural areas of developing countries, the ethical and legal frameworks for human subject protection need to be reconsidered in order to eliminate, or at least reduce, the vulnerability of those groups. While most research in this field focuses on the impact on individuals, this book breaks new ground in exploring how the interests of target groups are also seriously implicated in genetic work. The book argues that current regulations are far from sufficient to prevent harm to vulnerable groups and puts forward an alternative model for group protection in the context of human population genetic research in developing countries. The book will be of great interest to students and academics of medical law, ethics, and the implications of genetic research. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

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)

All investigators funded by the National Institutes of Health are now required to receive training about the ethics of clinical research. Based on a course taught by the editors at NIH, Ethical and Regulatory Aspects of Clinical Research is the first book designed to help investigators meet this new requirement. The book begins with the history of human subjects research and guidelines instituted since World War II. It then covers various stages and components of the clinical trial (...) process: designing the trial, recruiting participants, ensuring informed consent, studying special populations, and conducting international research. Concluding chapters address conflicts of interest, scientific misconduct, and challenges to the IRB system. The appendix provides sample informed consent forms. This book will be used in undergraduate courses on research ethics and in schools of medicine and public health by students who are or will be carrying out clinical research. Professionals in need of such training and bioethicists also will be interested. (shrink)

The prospect of replication of human beings through genetic manipulation has engendered one of the most controversial debates about reproduction in our society. Ideology is clearly influencing the direction of research and legislation on human cloning, which may present one of the greatest existential challenges to the meaning of creation. In this article, I argue that, in view of the possibility that human cloning and other emerging technologies could enhance physical and cognitive abilities, there is a need (...) for a different way of thinking about life, new technologies and creation. New scientific discoveries require a shift in the way psychology takes responsibility to help individuals and society. Today, psychology needs to follow the progress that humans are taking toward a transhuman stage of development as a transition to a later posthuman stage. (shrink)

The entwined history of humans and elephants is fascinating but often sad. People have used elephants as beasts of burden and war machines, slaughtered them for their ivory, exterminated them as threats to people and ecosystems, turned them into objects of entertainment at circuses, employed them as both curiosities and conservation ambassadors in zoos, and deified and honored them in religious rites. How have such actions affected these pachyderms? What ethical and moral imperatives should humans follow to ensure (...) that elephants are treated with dignity and saved from extinction? In Elephants and Ethics, Christen Wemmer and Catherine A. Christen assemble an international cohort of experts to review the history of human-elephant relations, discuss current issues of vital concern to elephant welfare, and assess the prospects for the ethical coexistence of both species. Part I provides an overview of the vexatious human-elephant relationship, from the history of our interactions to understanding elephant intelligence and sense of self. It concludes with a discussion of the issues of stress, pain, and suffering as experienced by elephants in human care and the problems inherent in assessing these subjectively. The second part explores how humans use elephants as tools and entertainment. It reviews domestic uses in Asia, examines the history and roles of elephants in zoos and circuses, and discusses the methods and ethics of training and caring for captive elephants. In Part III the contributors examine the fragile and conflict-filled world of human-elephant interactions in the wild. Each chapter delves into a different angle of the "elephant problem" -- the all-too-human problem of our growing populations taking over space that was historically the domain of these pachyderms. The chapters explore attempts to tame and "train" elephants in populous areas, the struggle over balancing species preservation while maintaining biodiversity in protected areas, and the conundrums posed by hunting, tourism, and human-elephant competition on rural land. That the future health and survival of elephants is dependent on human actions is irrefutable. In addressing these issues from multiple perspectives, Elephants and Ethics promotes mutual understanding of the cultural, conservation, and economic difficulties at the root of the many troublesome human-elephant interactions and poses new questions about our responsibility toward these largest of land mammals. (shrink)

Biomedical research on humans is an important part of medical progress. But, when lives are at risk, safety and ethical practices need to be the top priority. The need for the committees that regulate and oversee such research -- institutional review boards, or IRBs -- is growing. IRB members face difficult decisions every day. Evaluating the Science and Ethics of Research on Humans is a guide for new and veteran members of IRBs that will help them better understand the (...) issues involved and the tasks they will be required to perform. The most important purpose of an IRB is to protect the lives of human participants. For three major research areas -- drugs, medical devices, and genetic information -- Dennis J. Mazur shares the methods he has found useful in protecting human participants through the systematic review of scientific protocols and informed consent forms and through adherence to the federal regulations that apply. New members will gain understanding of how proposed research projects are to be reviewed from both scientific and ethical dimensions, how and when to ask key questions of principal investigators, how to work with principal investigators and research teams to ensure the best protection of human participants, and why to schedule regularly spaced reviews of a project that may have adverse outcomes. Based on Mazur's thirty years of research experience, this accessible and informative guide will give all IRB members the tools they need to protect human lives and facilitate the research process. (shrink)

Last year, the Department of Philosophy and Religious Studies of “Kyiv-Mohyla Academy” celebrated the 25 th anniversary. This article confines to this very special event and analyzes three important anthropological studies that deal with moral components of human being. The research directions have been formed at the Department since its establishment in 1992. -/- The first part of the article focuses mainly on the Kantian studies. According to Kant’s anthropology, human nature should be explored on two levels: (...) empirical and intelligible. Empirical level deals with general causality and considers the human being as the one entirely determined by nature. The second level considers the man from the perspective of freedom, moral activity, capacity to create aims and legislation. The research primarily gives a general scale of Kantian intelligible anthropology, which appears as a two-dimensional framework and consists of moral anthropological perspective and the one which Kant calls anthroponymy. Only the combination of these two aspects can allow us to comprehend the human nature as a whole. -/- The second section of this article will shed a light on the Nietzschean anthropological theory. The paper elucidates three basic dimensions of Nietzschean critical anthropology. First of all, of the author comments on Nietzsche’s critique of Christian morality. Next, he articulates the Nietzschean idea of self-overcoming. Finally, the author identifies the main features of his genealogy of morality. All those components bound together can provide a wide horizon of Nietzschean opinion on the ethical dimension of human being. -/- The last part of this article considers modern techno-anthropology in a broad sense. The problem of human and technology relation is considered in an ethical dimension, which unites all the three research directions. In this section, the author discusses the main components of technological mediation and non-neutrality. Using these two concepts, he proves that human nature (even in its ethical dimension) is not an autonomous and independent actor but the one that is deeply connected with the world and others through technology. -/- . (shrink)

To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which (...) they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues. (shrink)

For the average person, genetic testing has two very different faces. The rise of genetic testing is often promoted as the democratization of genetics by enabling individuals to gain insights into their unique makeup. At the same time, many have raised concerns that genetic testing and sequencing reveal intensely personal and private information. As these technologies become increasingly available as consumer products, the ethical, legal, and regulatory challenges presented by genomics are ever looming. Assembling multidisciplinary experts, this volume (...) evaluates the different models used to deliver consumer genetics and considers a number of key questions: How should we mediate privacy and other ethical concerns around genetic databases? Does aggregating data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate existing healthcare disparities? Contributing authors also provide guidance on protecting consumer privacy and safety while promoting innovation. (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)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.1 (2004) 47-54 [Access article in PDF] Ethical Guidelines for Human Embryonic Stem Cell Research*(A Recommended Manuscript) Adopted on 16 October 2001Revised on 20 August 2002 Ethics Committee of the Chinese National Human Genome Center at Shanghai, Shanghai 201203 Human embryonic stem cell (ES) research is a great project in the frontier of biomedical science for the twenty-first century. Be- (...) cause the research involves the use of human embryos, it triggers serious debate on ethical issues. Opponents consider the embryo to be an early form of human life that should be respected and not destroyed. However, the majority of scientists support embryonic stem cell research, believing that it offers good prospects for the treatment of diseases that have remained incurable until now and so will benefit humankind. The Ethics Committee of the Department of Ethical, Legal, and Social Implications of the Chinese National Human Genome Center at Shanghai seriously discussed the ethical debate initiated by embryonic stem cell research. We concluded that we should support the scientists of our country in actively carrying out human embryonic stem cell research for the noble cause of "medicine being a beneficent art." For the healthy and orderly development of human embryonic stem cell research in our country, we put forward the following recommended Ethical Guidelines for Human Embryonic Stem Cell Research as a reference for leaders, administrative departments, and related scientists. Preface Article 1. Human embryonic stem cells are the primitive cells that play the main role in the growth and development of a human body. These [End Page 47] primitive cells have the potential for infinite proliferation, self-renewal, and multi-directional differentiation. If scientists can discover the mechanism of differentiation of human embryonic stem cells, it will be possible to induce differentiation of human embryonic stem cells to form various types of human cells for clinical cell therapy. If human embryonic stem cell research can be integrated with modern biomedical engineering techniques, it also will be possible to make repair and replacement of human tissues and organs a reality. Article 2. There are two ways to classify human embryonic stem cells. One way is to classify them according to their potential for differentiation. There could be three kinds of stem cells: totipotent stem cells, pluripotent stem cells, and unipotent stem cells.A totipotent stem cell has the potential to develop into a whole individual. It can differentiate into the more than 200 cell types in the whole body, construct any tissue or organ of the body, and finally develop into a whole individual. The fertilized egg and the cleavage cells at the very early stage of embryonic development are totipotent stem cells.A pluripotent stem cell has the potential to differentiate into many cell types derived from the three embryonic layers. However, it has lost the capacity to develop into a complete organism.A unipotent stem cell is derived from the further differentiation of the pluripotent stem cell. It can differentiate only into one cell type such as a hematopoietic stem cell, neural stem cell, and others.The other way is to classify human stem cells according to their source. There could be two kinds of human stem cells: embryonic stem cells and tissue stem cells (also called adult stem cells). The former involves experimentation with embryos, which has serious ethical implications. Ethical issues associated with the latter are mainly expressed in the various opinions regarding the allocation of health resources. Article 3. Human embryonic stem cells are the group of cells called the blastocyst inner cell mass during the early stage of embryonic development. They are the main source of totipotent stem cells, and hence the focal and hot point in stem cell research. Studies on the clinical application of embryonic stem cells probably will involve use of the somatic cell nucleus transfer (SCNT) technique, which destroys the early human embryo. At present, the ethical and moral debate is very serious in human embryonic stem cell research regarding whether the research will develop... (shrink)

In Science and Ethics, Bernard Rollin examines the ideology that denies the relevance of ethics to science. Providing an introduction to basic ethical concepts, he discusses a variety of ethical issues that are relevant to science and how they are ignored, to the detriment of both science and society. These include research on human subjects, animal research, genetic engineering, biotechnology, cloning, xenotransplantation, and stem cell research. Rollin also explores the ideological agnosticism that scientists have displayed regarding subjective (...) experience in humans and animals, and its pernicious effect on pain management. Finally, he articulates the implications of the ideological denial of ethics for the practice of science itself in terms of fraud, plagiarism, and data falsification. In engaging prose and with philosophical sophistication, Rollin cogently argues in favor of making education in ethics part and parcel of scientific training. (shrink)

The individual self and its critics -- The individualist assumptions of bioethical frameworks -- The genetic self is the connected self -- The failures of individual ethics in the genetic era -- The communal turn -- Developing alternatives: benefit sharing -- Developing alternatives: trust -- The ethical toolbox part one: recognising goods and harms -- The ethical toolbox part two: applying appropriate practices -- Possible futures.

Like all community-based public health campaigns, proposals to use genetic information to improve the health and welfare of communities, whether the old eugenic sterilization campaigns or the routinized population screening programs of today's ‘public health genetics’, can involve asking affected individuals to make special sacrifices or assume special responsibilities on behalf of the community's welfare. Moreover, unlike public health interventions that restrict individual liberties in order to prevent health problems which all community members risk more or less equally, (...) genetic prevention strategies always require sacrifices on the part of the community who face the genetic risks in question on behalf of those who do not. The irony of ‘community genetics’ is that most human communities are much too heterogeneous to face universal gene pool disasters. (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 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)

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)

"The Ethics of Medical Testing: Modern Medical Testing Is Shaped by a Troubled Legacy; Strict Guidelines Ensure Safe and Ethical Medical testing on Humans; Medical Testing on Humans Can Be Dangerous and Corrupt; Review Boards Are Inadequate to Ensure Ethical Medical Testing; Medical Testing on Prisoners Is Unethical and Should Be Outlawed; Medical Testing on Prisoners Can Be Done Ethically; Medical Testing on Children Involves Unique Considerations; Special Rules Help Ensure Medical Testing in Vulnerable Populations Remains Ethical; (...) Using Animals for Medical Testing Is Unethical and Unnecessary; Using Animals for Medical Testing Is Both Ethical and Essential; Genetic Testing Ushers in a New Era of Ethical Considerations; Prenatal Genetic Testing Creates Ethical Dilemmas for Parents; International Standards for Medical Testing Are Essential to Prevent Ethical Abuses; Medical Testing In Developing Countries Is Conducted Ethically; Ethicists Disagree About Medical Testing Without Consent During Crises"--. (shrink)

Since its inception as an international requirement to protect patients and healthy volunteers taking part in medical research, informed consent has become the primary consideration in research ethics. Despite the ubiquity of consent, however, scholars have begun to question its adequacy for contemporary biomedical research. This book explores this issue, reviewing the application of consent to genetic research, clinical trials, and research involving vulnerable populations. For example, in genetic research, information obtained from an autonomous research participant may have significant bearing (...) on the interests of family members who have not consented to the study. This casts doubt on the adequacy of consent for such studies. This book also questions the assumptions that informed consent is essential and that it satisfactorily protects the principle of individual autonomy. It reviews recent empirical studies that challenge the possibility of truly informed consent and highlights the extent to which consent is governed by social norms and expectations. It also investigates how consent might be of secondary importance in some circumstances, for example when a research project appears to protect a public or community interest. (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)

1. Introduction -- 2. Philosophy of genetic technology and its relation to ethical theories -- 3. Ethics of genetic technology in plants and animals -- 4. Ethics of genetic technology in humans -- 5. Conclusion.

SummaryPedigree structures of 161 uncle/niece-aunt/nephew and 4420 first cousin consanguineous marriages registered during the 19th and 20th centuries in two large and very different Spanish regions have been analysed and their genetic consequences evaluated. The frequencies of the different pedigree subtypes within each degree of relationship were quite similar in both populations despite significant heterogeneity in inbreeding patterns. The mean X-linked inbreeding coefficient for each type of cousin mating was calculated and compared to that expected for autosomal genes. The effect (...) of genealogical structure on theFx/Fradio was compared to different cultural populations worldwide. Preferentiality and avoidance of close consanguinity along with specific types of pedigrees are discussed on the basis of premarital migration and sociocultural rules still deeply rooted in certain human groups. By admitting that the observedFxcoefficient is usually higher thanFin most human populations some remarks have been made in terms of population genetic risk. (shrink)

In this paper, the results of a pilot interview study with 19 subjects participating in an EEG-based non-invasive brain–computer interface (BCI) research study on stroke rehabilitation and assistive technology and of a survey among 17 BCI professionals are presented and discussed in the light of ethical, legal, and social issues in research with human subjects. Most of the users were content with study participation and felt well informed. Negative aspects reported include the long and cumbersome preparation procedure, (...) discomfort with the cap and the wet electrodes, problems concerning BCI control, and strains during the training sessions. In addition, some users reflected on issues concerning system security. When asked for morally problematic issues in this field of non-invasive BCI research, the BCI professionals stressed the need for correct information transfer, the obligation to avoid unrealistic expectations in study participants, the selection of study participants, benefits and strains of participation, BCI illiteracy, the possibility of detrimental brain modifications induced by BCI use, and problems that may arise at the end of the trials. Furthermore, privacy issues were raised. Based on the results obtained, psychosocial and ethical aspects of EEG-based non-invasive BCI research are discussed and possible implications for future research addressed. (shrink)

Creating Future People offers readers a fast-paced primer on how new genetic technologies will enable parents to influence the traits of their children, including their intelligence, moral capacities, physical appearances, and immune systems. It deftly explains the science of gene editing and embryo selection, and raises the central moral questions with colorful language and a brisk style. Jonathan Anomaly takes seriously the diversity of preferences parents have, and the limits policymakers face in regulating what could soon be a (...) global market for reproductive technology. He argues that once embryo selection for complex traits happens it will change the moral landscape by altering the incentives available to parents. 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 navigates difficult ethical issues with vivid language and scientifically-informed speculation about how genetic engineering will transform humanity. Key Features: Offers clear explanations of scientific concepts Explores important moral questions without academic jargon Brings discoveries from different fields together to give us a sense of where humanity is headed. (shrink)

New genetic technologies and their applications in biomedicine have important implications for social identities in contemporary societies. In medicine, new genetics is increasingly important for the identification of health and disease, the imputation of personal and familial risk, and the moral status of those identified as having genetic susceptibility for inherited conditions. There are also consequent transformations in national and ethnic collective identity, and the body and its investigation is potentially transformed by the possibilities of genetic investigations and (...) modifications (including the highly controversial terrains of reproductive technologies and the use of human embryos in biomedical research). The papers in this volume, drawn from an international array of authors, address these issues from a variety of national, disciplinary and empirical standpoints. An informative read for postgraduates and professionals in the fields of sociology, social anthropology, science and technology studies, and environmental studies, the chapters comprise empirically based and theoretically informed discussions of key sociological, anthropological, political and ethical issues. Using the resources of a wide range of social science disciplines to provide a comparative approach to complex issues, this superb collection explores the local and global consequences of the new genetics, and analyzes the social implications of these advances for identity formation in a period of rapid social change. (shrink)

The thrilling and terrifying history of genetic engineering. In 2018, scientists manipulated the DNA of human babies for the first time. As biologist and historian Matthew Cobb shows in As Gods, this achievement was one many scientists have feared from the start of the genetic age. Four times in the last fifty years, geneticists, frightened by their own technology, have called a temporary halt to their experiments. They ought to be frightened: Now we have powers that can target the (...) extinction of pests, change our own genes, or create dangerous new versions of diseases in an attempt to prevent future pandemics. Both awe-inspiring and chilling, As Gods traces the history of genetic engineering, showing that this revolutionary technology is far too important to be left to the scientists. They have the power to change life itself, but should we trust them to keep their ingenuity from producing a hellish reality? (shrink)

A lot of interest has been generated by the possibility of deriving gametes from embryonic stem cells and bone marrow stem cells. These stem cell derived gametes may become useful for research and for the treatment of infertility. In this article we consider prospectively the ethical issues that will arise if stem cell derived gametes are used in the clinic, making a distinction between concerns that only apply to embryonic stem cell derived gametes and concerns that are also relevant (...) for gametes derived from adult stem cells. At present, it appears preferable to use non-embryonic stem cells for the derivation of gametes. Adult stem cell derived gametes do not present any problems with regard to the moral status of the human embryo, bypass the safety risks linked to SCNT and do not present any ambiguity or novel problems with regard to informed consent, psychological consequences for the child or genetic parenthood. A remaining ethical concern, however, regards the safety of the procedure in terms of the welfare of the resulting children. This should spark a thorough reflection on how far one must go to accommodate a person’s wish to have a genetically related child. (shrink)

There has been considerable recent debate on the ethics of human enhancement. A number of prominent authors have been concerned about or critical of the use of technology to alter or enhance human beings, citing threats to human nature and dignity as one basis for these concerns. Frances Kamm has given a detailed rebuttal of Sandel's arguments, arguing that human enhancement is permissible. Nicholas Agar, in his book Liberal Eugenics, argues that enhancement should be permissible but (...) not obligatory. He argues that what distinguishes liberal eugenics from the objectionable eugenic practices of the Nazis is that it is not based on a single conception of a desirable genome and that it is voluntary and not obligatory. This article takes a more provocative position. It aims to argue that, far from its being merely permissible, we have a moral obligation or moral reason to enhance ourselves and our children. Indeed, we have the same kind of obligation as we have to treat and prevent disease. It begins by considering the current interests in and possibilities of enhancement. It then offers three arguments that we have very strong reasons to seek to enhance. (shrink)

Human genetic engineering may soon be possible. The gathering debate about this prospect already threatens to become mired in irresolvable disagreement. After surveying the scientific and technological developments that have brought us to this pass, _The Ethics of Genetic Engineering_ focuses on the ethical and policy debate, noting the deep divide that separates proponents and opponents. The book locates the source of this divide in differing framing assumptions: reductionist pluralist on one side, holist communitarian on the other. The (...) book argues that we must bridge this divide, drawing on the resources from both encampments, if we are to understand and cope with the distinctive problems posed by genetic engineering. These problems, termed "fractious problems," are novel, complex, ethically fraught, unavoidably of public concern, and unavoidably divisive. Berry examines three prominent ethical and political theories – utilitarianism, Kantianism, and virtue ethics – to consider their competency in bridging the divide and addressing these fractious problems. The book concludes that virtue ethics can best guide parental decision making and that a new policymaking approach sketched here, a "navigational approach," can best guide policymaking. These approaches enable us to gain a rich understanding of the problems posed and to craft resolutions adequate to their challenges. (shrink)

Recent advances in molecular genetics, plant physiology, and biochemistry have opened up the new biotechnology of herbicide resistant crops (HRCs). Herbicide resistant crops have been characterized as the solution for many environmental problems associated with modern crop production, being described as powerful tools for farmers that may increase production options. We are concerned that these releases are occurring in the absence of forethought about their impact on agroecosystems, the broader landscape, and the rural and urban economies and cultures. Many (...) of the benefits and risks associated with HRCs are not apparent to either the public, farmers, policy makers, or the scientific community. HRC technology raises moral issues in three areas: our duties toward the natural environment; our political and economic responsibilities to each other; and our communal character as one generation among many. We also need a rational basis on which to make evaluations of this new biotechnology. The technical aspects of their release require a logical guide to the ecological, environmental, and biological effects the release might have in sustainable agroecosystems. The initial step should include an assessment of the intrinsic qualities of the crop, the herbicide, and the resistance mechanisms. The second step should include an assessment of effects associated with population ecology, population genetics, environmental degradation, consumer health, and farm economic viability due to the resistant crop-herbicide pair. Herbicides have been used in crop production for nearly a half a century. There has been a tremendous increase in the use of these chemicals in that time. Society has seen the use of these chemicals not only help to feed many people, but also to bring costs not anticipated before the introduction of the chemicals. We need to draw on that long history of use and learn the lessons it can provide us as we approach the introduction and commercialization of the next generation of weed control technology, herbicide resistant crops. We also need to reflect on the lessons we missed during that half century because we spend more time imagining the possible benefits that would come from the technology than scrutinizing the possible harm. (shrink)

The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood (...) and tissue samples from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural–philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research. (shrink)

The genetic revolution is well underway, with genetic research and knowledge expanding at an exponential rate. Much of the new genetics research is focused on population groups, and proponents of “population genomics” argue that such studies are necessary since genetic “variation” among human populations holds the most promise for technological innovations that can improve human health and lead to increased understanding of the origin of human populations. Population genomic research thus targets specific groups (...) to discover variation that could lead to knowledge about genetic disorders, possible cures, and the origin and migration patterns of distinctive peoples. Research on genetic differences among groups or populations, however, raises many pressing ethical and legal questions. For example, focus on biological differences of racial and ethnic groups has in the past lead to assumptions about superiority and inferiority between groups, and in practice resulted in stigmatization and discrimination. Consequently, attention on groups should raise legal and moral red flags and compel us to move cautiously in this area. Pragmatically, targeting population groups as the object of study requires the determination of the nature and scope of “population groups” for purposes of genetics research. (shrink)

This review considers ethical challenges to research design and informed consent in biomedical and behavioral studies conducted in resource-poor settings. A review of the literature explores relevant social, cultural, and ethical issues in the conduct of biomedical and social health research in developing countries. Ten case vignettes illustrate ethical challenges that arise in international research with culturally diverse populations. Recommendations for researchers and policy-makers concerned about ethical practices in multinational studies conducted in resource-poor settings are also (...) listed. (shrink)

Technology shapes every aspect of human experience and it is the primary driver of social and ecological change. Given this, it is surprising that we spend so little time studying, analyzing, and evaluating new technologies. Occasionally, an issue grabs public attention--for example, the use of human embryonic stem cells in medical research or online file sharing of music and movies. However, these are the exceptions. For the most part, we enthusiastically embrace each new technology and application with little (...) critical reflection on how it will impact our lives and our world. What is more, when an issue raised by an emerging technology is attended to, we often lack the language, concepts, and critical perspectives to thoroughly address it. The aim of this textbook is to introduce students and other readers to the ethical issues associated with a broad array of emerging technologies--including nanotechnology, synthetic genomics, robotics, genetic engineering, geoengineering, synthetic meat, virtual reality, information technologies, sex selection, and many more--and to help them develop analytical skills and perspectives for effectively evaluating novel technologies and applications. (shrink)

This book is a collection of papers presented at an interdisciplinary workshop at the Calgary Institute for the Humanities in May 1980. The three broad issues covered are: the physician-patient relationship, the allocation of responsibility among doctors and nurses, and the political and social framework of the health care system. The first set of essays is concerned with the moral and legal aspects of the physician-patient relationship. The link between knowledge and power is examined as well as the (...) moral dilemmas posed by medical technology. These initial essays would alone justify this publ. (shrink)

It is argued that the question of whether or not one is required to be or become a strict vegetarian depends, not upon a rule or ideal that endorses vegetarianism on moral grounds, but rather upon whether one's own physical, biological nature is adapted to maintaining health and well-being on a vegetarian diet. Even if we accept the view that animals have rights, we still have no duty to make ourselves substantially worse off for the sake of other rights-holders. (...) Moreover, duties to others, such as fetuses and infants, may require one to consume meat or animal products. Seven classes of individuals who are not required to be or become vegetarians are identified and their examption is related to nutritional facts; these classes comprise most of the earth's population. The rule of vegetarianism defines a special or provisional duty rather than any general or universal rule, since its observance it based upon the biological capacities of individual humans whose genetic constitution and environment makes them suitably herbivorous. It is also argued that generalizing the vegetarian ideal as a social goal for all would be wrongful because it fails to consider the individual nutritional needs of humans at various stages of life, according to biological differences between the sexes, and because it would have the eugenic effect of limiting the adaptability of the human species. The appeal to the natural interests of omnivores will not justify any claim that humans may eat amounts of meat or animal products in excess of a reasonable safety margin since animals have rights-claims against us. (shrink)

It is argued that the question of whether or not one is required to be or become a strict vegetarian depends, not upon a rule or ideal that endorses vegetarianism on moral grounds, but rather upon whether one's own physical, biological nature is adapted to maintaining health and well-being on a vegetarian diet. Even if we accept the view that animals have rights, we still have no duty to make ourselves substantially worse off for the sake of other rights-holders. (...) Moreover, duties to others, such as fetuses and infants, may require one to consume meat or animal products. Seven classes of individuals who are not required to be or become vegetarians are identified and their examption is related to nutritional facts; these classes comprise most of the earth's population. The rule of vegetarianism defines a special or provisional duty rather than any general or universal rule, since its observance it based upon the biological capacities of individual humans whose genetic constitution and environment makes them suitably herbivorous. It is also argued that generalizing the vegetarian ideal as a social goal for all would be wrongful because it fails to consider the individual nutritional needs of humans at various stages of life, according to biological differences between the sexes, and because it would have the eugenic effect of limiting the adaptability of the human species. The appeal to the natural interests of omnivores will not justify any claim that humans may eat amounts of meat or animal products in excess of a reasonable safety margin since animals have rights-claims against us. (shrink)

Genetic modification leads to several important moral issues. Up until now they have mainly been discussed from the viewpoint that only individual living beings, above all animals, are morally considerable. The standpoint that also collective entities such as species belong to the moral sphere have seldom been taken into account in a more thorough way, although it is advocated by several important environmental ethicists. The main purpose of this article is to analyze in more detail than often has (...) been done what the practical consequences of this ethical position would be for the use of genetic engineering on animals and plants. The practical consequences of the holistic standpoint (focused on collective entities) of Holmes Rolston, III, is compared with the practical consequences of the individualistic standpoints (focused on individual living beings) of Bernard E. Rollin and Philipp Balzer, Klaus Peter Rippe, and Peter Schaber, respectively. The article also discusses whether the claim that species are morally considerable is tenable as a foundation for policy decisions on genetic engineering. (shrink)

For elite athletes seeking a winning advantage, manipulation of their own genetic code has become a realistic possibility. In Genetic Technology and Sport, experts from sports science, genetics, philosophy, ethics, and international sports administration describe the potential applications of the new technology and debate the questions surrounding its use.