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.

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)

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)

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)

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)

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

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)

Introduction The present volume contains the proceedings of the First International Conference on Medical Ethics which took place in Nicosia, from the 24th ...

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)

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)

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.

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.

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)

Graeme Laurie stepped down from the Chair in Medical Jurisprudence at the University of Edinburgh in 2019. This edited collection pays tribute to his extraordinary contributions to the field. Graeme has often spoken about the importance of 'legacy' in academic work and has forged a remarkable intellectual legacy of his own, notably through his work on genetic privacy, human tissue and information governance, and on the regulatory salience of the concept of liminality. The essays in this volume animate the (...) concept of legacy as lens of analysis for the study and practice of medical jurisprudence. In this light, legacy reveals characteristics of both benefit and burden, as both an encumbrance to and facilitator of the development of law, policy and regulation. Overall, the contributions reconcile the ideas of legacy and responsiveness and show that both dimensions are critical to achieve and sustain the health of medical jurisprudence itself as a dynamic, interdisciplinary and policy-engaged field of thinking. (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)

This book highlights both the relation between technology and care, and the normative aspects of economic analyses in health care. A series of concrete examples from various clinical fields (prenatal diagnosis, genetic tests, digital imaging in psychiatry, tube feeding in care for the elderly, and palliative sedation) helps the authors to consider how to integrate these technologies in a care context aimed upon humaneness. Each topic is analysed by leading European clinicians and health care ethicists.

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)

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.

Intrinsic value and animal integrity are two key concepts in the debate on the ethics of the genetic engineering of laboratory animals. These concepts have, on the one hand, a theoretical origin and are, on the other hand, based on the moral beliefs of people not directly involved in the genetic modification of animals. This ‘external’ origin raises the question whether these concepts need to be adjusted or extended when confronted with the moral experiences and opinions of people (...) directly involved in the creation or use of transgenic laboratory animals. To answer this question, 35 persons from the practice of biomedical research who are directly involved in genetic engineering (scientists, biotechnicians, animal caretakers and laboratory animal scientists) were interviewed. They were asked to give their moral opinion on different aspects of the genetic engineering of animals and to react to statements about the concepts of intrinsic value and animal integrity. Analysis of the interviews showed that, contrary to what is often assumed, the respondents embraced these concepts, even those senses that (more) specifically apply to genetic engineering. And although the respondents raised some objections that go beyond issues of animal welfare, these objections could quite well be expressed in terms of the concepts of intrinsic value and animal integrity. In short, the results of the present study strongly suggest that these concepts do not have to be adjusted or extended in the light of the moral experiences and opinions from practice. (shrink)

“An original, compelling, and provocative exploration of ethical issues in our society, with thoughtful and balanced commentary. I have not seen anything like it.” —Alan Lightman, author of Einstein’s Dreams Drawing upon the author’s two decades teaching medical ethics, as well as his work as a practicing psychiatrist, this profound and addictive little book offers up challenging ethical dilemmas and asks readers, What would you do? A daughter gets tested to see if she’s a match to donate (...) a kidney to her father. The test reveals that she is not the man’s biological daughter. Should the doctor tell the father? Or the daughter? A deaf couple prefers a deaf baby. Should they be allowed to use medical technology to ensure they have a child who can’t hear? Who should get custody of an embryo created through IVF when a couple divorces? Or, when you or a loved one is on life support, Who says you’re dead? In short, engaging scenarios, Dr. Appel takes on hot-button issues that many of us will confront: genetic screening, sexuality, privacy, doctor-patient confidentiality. He unpacks each hypothetical with a brief reflection drawing from science, philosophy, and history, explaining how others have approached these controversies in real-world cases. Who Says You’re Dead? is designed to defy easy answers and to stimulate thought and even debate among professionals and armchair ethicists alike. (shrink)

Scientific research and ethics -- Ethical theory and decision making -- Data acquisition and management -- Mentoring and professional relationship -- Collaboration in research -- Authorship -- Publication and peer review -- Misconduct in research -- Intellectual property -- Conflicts of interest and scientific objectivity -- The use of animals in research -- The use of human subjects in research -- The use of vulnerable subjects in research -- Genetics, cloning, and stem cell research -- International research.

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)

The phenomenon of the New Genetics raises complex social problems, particularly those of privacy. This book offers ethical and legal perspectives on the questions of a right to know and not to know genetic information from the standpoint of individuals, their relatives, employers, insurers and the state. Graeme Laurie provides a unique definition of privacy, including a concept of property rights in the person, and argues for stronger legal protection of privacy in the shadow of developments in human (...) genetics. He challenges the role and the limits of established principles in medical law and ethics, including respect for patient autonomy and confidentiality. This book will interest lawyers, philosophers and doctors concerned both with genetic information and issues of privacy; it will also interest genetic counsellors, researchers, and policy makers worldwide for its practical stance on dilemmas in modern genetic medicine. (shrink)

The concept of community is increasingly the focus of political argument in Britain, the United States and elsewhere around the world. The sense people have of belonging to coummunities provides a powerful motivation which continues to affecct the political and social face of the world. Recently, debate about the relationship between individuals and their communities has become central to the making of both, American and European social policy. In the United Kingdom this is especially apparent in the area of health (...) care, where ideas of community have informed recent legislation concerning community care, community health trusts and the Children Act among others. This volume explores the focus of interest in community and the emerging theoretical oppostion between communitarianism and liberalism, as well as the practical, theoretical and ethical issues relating to community in the health care professions, including a discussion of the health service as Civil Association, an analysis of liberal and communitarian views on the allocaiton of health care resources, an exploration of the use of genetic information and an examination of health care decision making for incapacitated elderly patients. (shrink)

Are there parallels between the "moment of insight" in science and the emergence of the "unknowable" in religious faith? Where does scientific insight come from? Award-winning biologist Robert Pollack argues that an alliance between religious faith and science is not necessarily an argument in favor of irrationality: the two can inform each other's visions of the world. Pollack begins by reflecting on the large questions of meaning and purpose--and the difficulty of finding either in the orderly world described by the (...) data of science. He considers the obligation to find meaning and purpose despite natural selection's claim to be a complete explanation of our presence as a species--a claim that calls upon neither natural intention, nor design, nor Designer. Next, the book focuses on matters of free will, from the choice of a scientist to accept evidence, to the choice of a religious person to accept a revelation, to a patient's loss of free will in medical treatment. Here Pollack addresses questions of ethics and offers a provocative comparison of two difficult texts whose contents remain incompletely understood: the DNA "text" of the human genome and the Hebrew record of Jewish written and oral law. In closing, Pollack considers the promise of genetic medicine in enabling us to glimpse our own future and offers a reconsideration of the possible utility of the so-called placebo effect in curing illness. Whether refuting a DNA-based biological model of Judaism or discussing the Darwinian concept of the species, Pollack, under the banner of free inquiry, presents a genuine, vital, and well-argued assay of the intersection of science and religion. (shrink)

This thesis studies some philosophical and ethical issues that economic design raises. Chapter 1 gives an overview of economic design and argues that a crossfertilisation between philosophy and economic design is possible and insightful for both sides. Chapter 2 examines the implications of mechanism design for theories of rationality. I show that non-classical theories, such as constrained maximization and team reasoning, are at odds with the constraint of incentive compatibility. This poses a problem for non-classical theories, which proponents of (...) these theories have not addressed to date. Chapter 3 proposes a general epistemology of economic engineering, which is motivated by a novel case study, viz. the reform of a matching market for medical practitioners. My account makes use of causal graphs to explain how models allow encoding counterfactual information about how market outcomes change if the design of the market changes. The second part of the thesis examines ethical issues. In Chapter 4, I apply tools from matching theory to gain insights into the distribution of refugees, such as among countries of the European Union. There is an ethical trade-off between the fairness of matchings and their efficiency, and I argue that in this context, fairness is the morally weightier criterion. Chapter 5 deals with the ethics of kidney exchange. Against critics, I give two arguments for the implementation of kidney exchange programmes. The first argument is that they are instrumental in meeting a moral obligation, namely to donate effectively. The second is that kidney exchange may increase the motivation for altruistic donations, because the donation of one kidney may trigger > 1 life savings. The final chapter identifies questions for future research and it closes with some thoughts about the future trajectory of economic design. (shrink)

From what race is to what race does -- Reproductive technologies are not "post-racial" -- Race isn't just made, it's used -- A technological history of race -- "I just want children like me" -- Race and choice in the era of liberal eugenics.

This honest, forthright, and beautifully-written book introduces readers to the human variations on medical topics spoken of in abstract in the daily news--euthanasia, assisted suicide, abortion, "extreme procedures", genetic testing, experimental surgeries--and to the people who must agonize over those decisions regarding themselves and their loved ones.

Background: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. Objectives: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general (...) as described in the literature. Method: A modified Delphi study in two rounds Results: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as “confidentiality of genetic information” and “implications of research for relatives” which changes the impact and application of existing ethical topics such as “informed consent” and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. Conclusions: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics. (shrink)

Originally published: c2000. With new pref. An award-winning biologist argues that the intersection of scientific creativity and religious insight is a prerequisite for the emergence of a more humane medical science.

A broad critical review of national policies on biomedical research - human, epidemiologic, clinical trials, genetic, reproductive, etc.

This important volume covers ethics and integrity in health and life sciences research. It addresses concerns in gene editing, dual use and misuse of biotechnologies, big data and nutritional science in health and medicine, and covers attempts at ensuring ethical practices in such fields are shared internationally.

The vast majority of gamete donations worldwide are made anonymously, and in some countries, including Spain, France, and Denmark, the anonymity of donors is explicitly protected by law. Nonetheless, a growing number of countries have called into question the morality of such practices and are enacting laws allowing children access to identifying information about their gamete donor. A significant reason for the growing legislative support for nonanonymous gamete donations is the belief that donor‐conceived children have a fundamental moral right (...) to know their genetic origins and that the right should be legally protected. A variety of factors, such as the increasing number of children born by means of gamete donation, advances in genetic science and technology that make it easy to discover the identity of a person's genetic parents, and the widespread belief that genetic information is important for protecting people's health, have made this alleged right quite salient, even leading some to challenge the ethical appropriateness of gamete donation practices altogether. Often, however, this right is assumed rather than explicitly justified. The purpose of this paper is to call into question the ethical justifications that are often thought to ground a right to know one's genetic origins.Proponents of a right to know this information usually argue that such a right protects at least three vital interests: the interest of donor‐conceived people in having strong family relationships, their health interests, and their interest in forming a healthy identity. These different interests might be protected by different aspects of the right to know one's genetic origins: knowing one's mode of conception, accessing medically relevant information, and accessing identifying information about one's genetic parents. I will discuss each of these interests and explore whether and how they might be set back by an individual's lack of access to information about his or her genetic parentage. I will also evaluate whether donor anonymity policies are, as many of their opponents argue, morally impermissible because they fail to protect these important interests. (shrink)

With the reduction in diseases due to nutritional deficiencies and infection, disorders which are wholly or partly genetic are becoming relatively more important in all branches of modern medicine. Genetic counselling has developed in recent years from just explaining to an individual or a couple the risk of them producing a handicapped child, to the possibility in many cases of better diagnosis and active intervention to reduce the risks. At the same time antenatal screening programmes have been introduced to detect (...) women who may be carrying a fetus with a severe handicapping anomaly. The ethical aspects of these advances are considered in this article. A practical approach to the resolution of any dilemmas is proposed which concentrates on the duties incumbent on doctors and other health care workers involved with patients who have or may carry genetic disorders. (shrink)

Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point (...) that DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. (shrink)

Science is a force for good in the world--at least usually. But sometimes, when obsession gets the better of scientists, they twist a noble pursuit into something sinister. Under this spell, knowledge isn't everything, it's the only thing--no matter the cost. Bestselling author Sam Kean tells the true story of what happens when unfettered ambition pushes otherwise rational men and women to cross the line in the name of science, trampling ethical boundaries and often committing crimes in the process. (...) The Icepick Surgeon masterfully guides the reader across two thousand years of history, beginning with Cleopatra's dark deeds in ancient Egypt. The book reveals the origins of much of modern science in the transatlantic slave trade of the 1700s, as well as Thomas Edison's mercenary support of the electric chair and the warped logic of the spies who infiltrated the Manhattan Project. But the sins of science aren't all safely buried in the past. Many of them, Kean reminds us, still affect us today. We can draw direct lines from the medical abuses of Tuskegee and Nazi Germany to current vaccine hesitancy, and connect icepick lobotomies from the 1950s to the contemporary failings of mental-health care. Kean even takes us into the future, when advanced computers and genetic engineering could unleash whole new sways to do one another wrong. Unflinching, and exhilarating to the last page, The Icepick Surgeon fuses the drama of scientific discovery with the illicit thrill of a true-crime tale. With his trademark wit and precision, Kean shows that, while science has done more good than harm in the world, rogue scientists do exist, and when we sacrifice morals for progress, we often end up with neither. (shrink)

The growing potential of biomedical technologies has increasingly been associated with discussions surrounding the ethical aspects of the new technologies in different societies. Advances in genetics, stem cell research and organ transplantation are some of the medical issues that have raised important ethical and social issues. Special attention has been paid towards moral ethics in Islam and medical and religious professions in Iran have voiced the requirement for an emphasis on ethics. In the (...) last decade, great strides have been made in biomedical ethics, especially in the field of education, research and legislation. In this article, contemporary medical ethics in Iran, and the related moral philosophy, have been reviewed in brief and we have discussed some of the activities in the field of medical ethics that have been carried out in our country within recent years. These activities have included the establishment of the National and Regional Committees for Medical Research Ethics and the production of national codes of ethics in biomedical research in the 1990s and the introduction of a comprehensive strategic plan for medical ethics at the national level in 2002. This paper will discuss these issues, along with the production, in 2005, of the Specific National Ethical Guidelines for Biomedical Research. (shrink)

Faced with the exponential development of Big Data and both its legal and economic repercussions, we are still slightly in the dark concerning the use of digital information. In the perpetual balance between confidentiality and transparency, this data will lead us to call into question how we understand certain paradigms, such as the Hippocratic Oath in medicine. As a consequence, a reflection on the study of the risks associated with the ethical issues surrounding the design and manipulation of this (...) "massive data" seems to be essential. This book provides a direction and ethical value to these significant volumes of data. It proposes an ethical analysis model and recommendations to better keep this data in check. This empirical and ethico-technical approach brings together the first aspects of a moral framework directed toward thought, conscience and the responsibility of citizens concerned by the use of data of a personal nature. Defines Big Data applications in health Presents the ethical value of the medical datasphere via the description of a model of an ethical analysis of Big Data Provides the recommendations and steps necessary for successful management and governance of personal health data Helps readers determine what conditions are essential for the development of the study of Big Data. (shrink)

The Direction of Medical Ethics The direction bioethics, and specifically medical ethics, will take in the next few years will be crucial. It is an emerging specialty that has attempted a great deal, that has many differing agendas, and that has its own identity crisis. Is it a subspecialty of clinical medicine? Is it a medical reform movement? Is it a consumer pro tection movement? Is it a branch of professional ethics? Is it a ra tionale for (...) legal decisions and agency regulations? Is it something physicians and ethical theorists do constructively together? Or is it a morally concentrated attack on high technology, with the prac titioners of scientific medicine and the medical ethicists in an adversarial role? Is it a conservative endeavor, exhibiting a Frankenstein syn drome in Medical Genetics ("this time, they have gone too far"), or a Clockwork Orange syndrome in Psychotherapy ("we have met hods to make you talk-walk-cry-kill")? Or does it suffer the afflic tion of overdependency on the informal fallacy of the Slippery Slope ("one step down this hill and we will never be able to stop") that remains an informal fallacy no matter how frequently it's used? Is it a restricted endeavor of analytic philosophy: what is the meaning of "disease," how is "justice" used in the allocation of medical resources, what constitutes "informed" or "consent?" Is it applied ethics, leading in clinical practice to some recommenda tion for therapeutic or preventive action? This incomplete list of questions indicates just how complex. (shrink)

Originally published in 1999, this classic textbook includes twenty-six cases with commentary and bibliographic resources designed especially for medical students and the training of ethics consultants. The majority of the cases reflect the day-to-day moral struggles within the walls of hospitals typically described as community hospitals; as a result, the cases do not focus on esoteric, high-tech dilemmas--viz., genetic engineering or experimental protocols--but rather on fundamental problems that are pervasive in basic healthcare delivery in the United States: where (...) to send a frail, elderly patient who refuses to go to a nursing home; what role the family should play in making a treatment decision; what a hospital should do when it is getting stuck with too many unpaid bills. This thoroughly revised and updated second edition includes thirteen new cases, five of which are designated as "skill builder" cases aimed specifically for those participants in the Neiswanger Institute for Bioethics' web-based instructional program. This edition has also been restructured for teachability, and will feature reformatted and revised commentaries. (shrink)

How long new biomedical technologies are welcome paths for treatment of diseases or reduction of sufferings and where does the aspiration of human enhancement start? Are there basic criteria and standards for a demarcation or has this question to be answered pragmatically, based on a deliberated experience, open for the respective situation? In any case, a common understanding about boundary lines between elemental self-development and forced self-optimization is essential. The volume contains contributions to this burning issue given and debated during (...) the Berlin conference of the Protestant Research Academy (Evangelische Forschungsakademie) in January 2018 to stimulate a public discourse beyond pure scientific discussions. (shrink)

La médecine personnalisée devrait être renommée "médecine des données". Les finalités de cette médecine sont, à partir d'une quantité importante de données, de déduire ou d'induire différentes informations valorisables à la fois au niveau du soin, de la recherche et de l'industrie. Pour cela, un réseau d'échange ou de partage d'échantillons biologiques, de données génétiques et d'informations entre patients, cliniciens, chercheurs et industriels est développé, grâce à des voies de communication dématérialisées. Ce réseau permet de centraliser le stockage, et une (...) partie du traitement et de l'analyse, au niveau de centres de soin et de recherche académiques et/ou de "plateformes bifaces". Les enjeux éthiques majeurs de cette médecine résident alors dans les moyens et les modalités d'accès, de stockage et d'usage des données génétiques et requièrent des solutions. L'intérêt de cette thèse de doctorat est donc de proposer à la fois une nouvelle méthode de recherche en bioéthique permettant de mieux étudier de tels phénomènes sociaux complexes et une solution possible aux enjeux éthiques identifiés grâce à cette méthode. Il s'agit, respectivement, de la modélisation théorique systémique inductive qualitative et du consentement éclairé exprès dynamique électronique. (shrink)

La médecine personnalisée expérimente dans le cadre du cancer, ou thérapies ciblées, ou encore médecine prédictive, voire médecine de précision. toutes ces appellations sous-entendent un domaine qui s'ébauche tant au niveau de la recherche qu'à celui de la clinique. Ce domaine se constitue de pratiques, de normes qui s'élaborent et de règles qui établissent de véritables limites. Ce volume présente ce que les disciplines du droit, de la biologie, de la médecine et de la philosophie ont à dire conjointement sur (...) ce nouvel objet qui déjà intéresse au-delà du cancer toutes les maladies chroniques. Ce volume rassemble ainsi les réflexions de tous les pionniers de ce domaine sous la coordination de Michèle Jean-Stanton du Centre de Recherche de Droit Public (CRDP) de l'Université de Montréal et de Christian Hervé de l'Université Sorbonne Paris Cité. Leurs expressions, ainsi exposées à la suite d'un séminaire qu'ils ont tous suivi consciencieusement, affirment ainsi une certaine idée, une éthique même de ces nouvelles pratiques non encore totalement réglementées. (shrink)

We humans can enhance some of our mental and physical abilities above the normal upper limits for our species with the use of particular drug therapies and medical procedures. We will be able to enhance many more of our abilities in more ways in the near future. Some commentators have welcomed the prospect of wide use of human enhancement technologies, while others have viewed it with alarm, and have made clear that they find human enhancement morally objectionable. The Ethics (...) of Human Enhancement examines whether the reactions can be supported by articulated philosophical reasoning, or perhaps explained in terms of psychological influences on moral reasoning. An international team of ethicists refresh the debate with new ideas and arguments, making connections with scientific research and with related issues in moral philosophy. (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)

The IOC and WADA have announced their ambition to develop control program in order to detect athletes' illegitimate use of genetic technology for enhancing performance. Although it is far from clear what such uses should be counted as illegitimate, as well as to what extent the idea of control programs for such things is a feasible idea, I will assume that such programs will concern so-called somatic genetic modifications that aims at altering the athlete's initial bodily biochemistry in a way (...) that may enhance performance without the presence of any medical reason for undertaking such modifications. This means that the envisioned control-program will have to make use of the method of genetic testing in order to detect the possible presence (or non-presence) of various genetic variants within the athlete. As a consequence of this, several ethical issues familiar within the field of genetic testing for health purposes are suddenly actualised within the area of doping control. These issues concern primarily how to handle and communicate the information about the athlete that is uncovered by such testing. However, due to the ways in which gene doping may be performed, in the case of atheletic control programs, issues of medical safety and the question of what hardships it is reasonable to require of athletes to endure also become paramount. As a consequence, one may ask whether or not sporting ethics will have to consider applying the rule of informed consent in connection to testing programs of the kind here discussed. (shrink)