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)

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)

This book considers all aspects of privacy and security relating to an individual's DNA, with a concentration on fundamental human rights as well as specific cases and examples, in addressing greater security and privacy in the modern world.

The science and technology of genetic testing is rapidly advancing with the consequences that genetic testing may well offer the prospect of being able to detect the onset of future disabilities. Some recent research also indicates that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed and win or the propensity for risk-taking, which may be of interest to third parties. However, as this technology becomes more prevalent there is a danger (...) that the genetic information may be misused by entities such as employers, insurance companies, educational facilities, and finance companies and that people with particular genetic profiles may be discriminated against.This book explores the different types and the potential uses of genetic testing. The book highlights the ethical and legal dilemmas and the challenges arising as a result of emerging and rapidly advancing genetic science. Chapters in the book assess the importance and impact of the US Genetic Information Non-Discrimination Act (GINA) in the employment and health insurance contexts asking whether it is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating individuals' fears of discrimination. The book then goes on to make the case for regulation at the European Union level in order to protect the privacy of genetic information and to prevent the discriminatory use of genetic information in Europe. It considers what can be learnt from the experience of the US in addressing ethical and legal issues as well as the impact that the UN Convention on the Rights of Persons with Disabilities is having on this debate within the EU. (shrink)

Society has historically not taken a benign view of genetic disease. The laws permitting sterilization of the mentally re tarded~ and those proscribing consanguineous marriages are but two examples. Indeed as far back as the 5th-10th centuries, B.C.E., consanguineous unions were outlawed (Leviticus XVIII, 6). Case law has traditionally tended toward the conservative. It is reactive rather than directive, exerting its influence only after an individual or group has sustained injury and brought suit. In contrast, state legislatures have not (...) been inhibited in enacting statutes. Many of their products can be characterized as hasty, unnecessary, ill-conceived, and based on the heart rather than the head. Moreover the lack of expert consultation sought has also been remarkable. One state legislature, for example, has advocated immunization for sickle cell anemia! Many others have enacted laws for the screening of inborn errors of metabolism, e.g., phenylketon uria, but have poorly defined the lines of responsibility to secure compliance. A spate of specific disease-related bills has emerged in the u.S. Congress, each seeking recognition and appropriations. Sickle cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have been among the front-runners for support. Finally, in 1975, Congress has begun to examine an omnibus bill concerning all forms of genetic disease. The bill, termed the National Genetic Diseases Act is, however, still far from being enacted. (shrink)

Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation is severely flawed because (...) of the difficulty in distinguishing genetic from nongenetic tests. In addition, barring the use by insurance companies of a genetic test but not a nongenetic test (conceivably for the same multifactorial disease) raises issues of fairness in health insurance. These arguments suggest that ultimately the problems arising from genetic discrimination cannot be solved by narrowly focused legislation but only by a modification of the entire health care system. (shrink)

本书内容包括:绪论;关于基因歧视之各项争议;关于基因歧视之现状与法律规范;隐私权;平等权;分配正义;基因歧视与法律对策之初步考察与建议。.

This timely work brings together a group of the nation's leading experts in genetics, medicine, history of science, health, law, philosophy of science, and medical ethics to assess the current state of modern human genetics, and to begin to chart the legal and ethical guidelines needed to prevent the misuse of human genetics from leading to the abuse of human beings. The six sections of the book, read together, map the social policy con tours of modern human genetics. The first (...) part describes the science of the Human Genome Project. The second addresses specific social policy implications, including the relevance of recombinant DNA history, the eugenics legacy, military applications, and issues of race and class in the context of genetic discrimination. Broader philosophical issues, including reductionism and determinism, the concept of disease, and using germline gene therapy to "improve" human beings are discussed in the third part. (shrink)

This paper discusses legal and ethical issues related to genetic screening. It is argued that persons identified with actual or perceived deleterious genetic markers are protected by the American with Disabilities Act of 1990 and the Civil Rights Act of 1991, if members of a protected group, regardless of whether or not they are currently ill. However, legislation may not protect all employees in all scenarios, in which case, ethical principles should guide decision-making. In doing so (...) a model of preventive ethics is proposed to better understand the multiple levels on which this issue resides. (shrink)

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance (...) Portability and Accountability Act prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms. (shrink)

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance (...) Portability and Accountability Act prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms. (shrink)

This interactive independent teaching and learning tutorial can be used by individuals or small groups and takes a problem-based-learning approach to the complex legal and ethical issues raised by six scenarios. Based on real cases clearly demonstrating the problems arising from recent medical advancements, the cases cover reproductive technology, consent, genetic screening, participation in research trials, paternity and confidentiality. Additional features of the CD-ROM are a comprehensive glossary, cross-references to The Cambridge Medical Ethics Workbook and definitions from the (...) Dictionary of Medical Ethics. (shrink)

Analysis and comparison of genetic screening programs shows that the extent of development of programs varies widely across Europe. Regional variations are due not only to genetic disease patterns but also reflect the novelty of genetic services. In most countries, the focus for genetic screening programs has been pregnant women and newborn children. Newborn children are screened only for disorders which are treatable. Prenatal screening when provided is for conditions for which termination may (...) be offered. The only population screening programs for adults are those for thalassaemia carrier status in Cyprus, Greece and Italy. Social responses to genetic screening range from acceptance to hostility. There is a fundamental tension between individual and communi ty in the debates in various European countries about implementation of screening programs. Opposition to genetic screening is frequently expressed in terms of arguments about "eugenics" with insufficient regard to the meaning of the term and its implications. Only a few countries have introduced explicit legislation on genetic screening. Legislation to address discrimination may provide more safeguards than legislation protecting genetic information itself. (shrink)

This special issue of the Modern Law Review addresses a range of key issues - conceptual, ethical, political and practical - arising from the regulatory ...

Genetic information may be used by health and disability insurance companies to deny or restrict coverage. How health insurance companies use genetic information, and how public policy has limited that use, can be illustrative for genetics and disability insurance policy.

Genetic-specific nondiscrimination laws have been enacted in most states, but the laws are ineffective and increase the stigma of genetic conditions. Whether these laws are better than no new legislation depends on their consequences and a recognition of their limitations.

The Human Genome Project has allowed researchers to gain new insights into the genetic causes of health and disease. With this knowledge comes the potential to develop new genetic tests that are capable of predicting the risk of disease or disability among presently healthy individuals. This information is potentially beneficial in that it may allow individuals to develop strategies to reduce their risk of illness and may allow health providers to recognize and treat the early stages of disease (...) more effectively. As knowledge about genetic contributions to disease continues to grow and genetic testing technology becomes more widespread, there is a risk that personal genetic information could be used in ways potentially concerning to consumers. Genetic testing technology could potentially be used to discriminate against individuals in terms of their ability to obtain health, life, and disability insurance. Decreased access to insurance, in turn, significantly hinders access to health care and income for oneself and/or for one's dependent. (shrink)

The extent to which society utilises the law to enforce its moral judgments remains a dominant issue in this era of embryonic stem cell research, preimplantation genetic diagnosis, and human reproductive cloning. Balancing the potential health benefits and diverse moral values of society can be a tremendous challenge. In this context, governments often adopt legislative bans and prohibitions and rely on the inflexible and often inappropriate tool of criminal law. Legal prohibitions in the field of reproductive genetics are not (...) likely to reflect adequately the depth and diversity of competing stakeholder positions. Rather, a comprehensive and readily responsive regulatory policy is required. Such a policy must attend to the evolving scientific developments and ethical considerations. We outline a proposal for effective, responsive, and coherent oversight of new reproductive genetic technologies. (shrink)

BackgroundEvolving medical technology, advancing biomedical and drug research, and changing laws and legislation impact patients’ healthcare options and influence healthcare practitioners’ (HCPs’) practices. Conscientious objection policy confusion and variability can arise as it may occasionally be unclear what underpins non-participation. Our objective was to identify, analyze, and synthesize the factors that influenced HCPs who did not participate in ethically complex, legally available healthcare.MethodsWe used Arksey and O’Malley’s framework while considering Levac et al.’s enhancements, and qualitatively synthesized the evidence. We (...) searched Medline, CINAHL, JSTOR, EMBASE, PsychINFO, Sociological Abstracts, and ProQuest Dissertations and Theses Global from January 1, 1998, to January 15, 2020, and reviewed the references of the final articles. We included articles written in English that discussed the factors that influenced physicians and registered nurses (RNs) who did not participate in end-of-life (EOL), reproductive technology and health, genetic testing, and organ or tissue donation healthcare areas. Using Covidence, we conducted title and abstract screening, followed by full-text screening against our eligibility criteria. We extracted the article’s data into a spreadsheet, analyzed the articles, and completed a qualitative content analysis using NVivo12.ResultsWe identified 10,664 articles through the search, and after the screening, 16 articles were included. The articles sampled RNs (n = 5) and physicians (n = 11) and encompassed qualitative (n = 7), quantitative (n = 7), and mixed (n = 2) methodologies. The care areas included reproductive technology and health (n = 11), EOL (n = 3), organ procurement (n = 1), and genetic testing (n = 1). One article included two care areas; EOL and reproductive health. The themed factors that influenced HCPs who did not participate in healthcare were: (1) HCPs’ characteristics, (2) personal beliefs, (3) professional ethos, 4) emotional labour considerations, and (5) system and clinical practice considerations.ConclusionThe factors that influenced HCPs’ who did not participate in ethically complex, legally available care are diverse. There is a need to recognize conscientious objection to healthcare as a separate construct from non-participation in healthcare for reasons other than conscience. Understanding these separate constructs will support HCPs’ specific to the underlying factors influencing their practice participation. (shrink)

One of the most important and contentious policy issues surrounding genetics is whether genetic information should be treated separately from other medical information. The view that genetics raises distinct issues is what Thomas Murray labeled “genetic exceptionalism,” borrowing from the earlier term “HIV exceptional-ism.” The issue of whether the use of genetic information should be addressed separately from other health information is not merely an academic concern, however. Since the Human Genome Project began in 1990, nearly every (...) state has enacted legislation prohibiting genetic discrimination in health insurance; two-thirds of the states have enacted laws prohibiting genetic discrimination in employment, and other state laws have been enacted dealing with genetic discrimination in life insurance, genetic privacy, and genetic testing. Bills in Congress also would prohibit genetic discrimination in health insurance and employment. (shrink)

Fornece um panorama sobre os avanços biotecnológicos, dando ênfase aos aspectos jurídicos e éticos do impacto destes na área genética sobre o homem e o meio ambiente.

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)

Objective: To analyse legislation and medical professionals’ position concerning the doctor’s role in assisted reproduction techniques in Italy, and to discuss the implications for physicians of preimplantation genetic diagnosis .Background: Until recently a strict interpretation of the assisted reproduction law and the guidelines subsequently issued, lead to denying infertile couples affected by genetic diseases the right to resort to PGD. In October 2006 the Constitutional Court ruled regarding the question of the constitutional legitimacy of the prohibition of (...) PGD.Discussion: The Constitutional Court declared the manifest inadmissibility of the question of the constitutional legitimacy of article 13 of law 40/2004. The debate has become very animated since the ruling. After the negative sentence of the Constitutional Court, three further sentences recognised the right of couples to obtain PGD, representing a hard blow to law 40/2004 and to the ministerial guidelines; a further confirmation of the untenability of a law that violates fundamental principles such as the right to healthcare for women and the unborn child, the right to responsible motherhood and to informed consent.Conclusion: It seems that in Italy the legislative inadequacy for medically assisted procreation is reprieved by the courageous decisions of the judges, which refer to the values of the Italian Constitution, in defence of the fundamental rights of the citizens. (shrink)

Although principles, as a framework to resolving moral dilemmas are still debated and seem to be in a philosophical quagmire, there are strong arguments that by specification one can resolve case-specific dilemmas in certain areas of bioethics. When it comes to genetic screening and testing however, the problem at the base is a moral disagreement on higher-order principles—such as the status of the embryo and parental issues. No amount of specification can resolve these issues without a dose of (...) relativism. We explore a possibility of agreement on debatable areas specifically in regard to genetics—such as conferring status to the embryo solely for purposes of preventing genetic selection; but it is difficult to see how this can be incorporated into law without extrapolation to other areas. We conclude therefore that the four-principles approach, albeit valuable for expounding opposing views and discussing issues, cannot either alone or by specification, help resolve issues of genetic screening and testing without agreeing on higher order principle. This does not seem to be a possibility in the near future. (shrink)

The need to regulate access to genetic resources and ensure a fair and equitable sharing of any resulting benefits was at the core of the development of the Convention on Biological Diversity (CBD). The CBD established a series of principles and requirements around access and benefit sharing (ABS) in order to increase transparency and equity in the international flow of genetic resources, yet few countries have been able to effectively implement them and ABS negotiations are often paralysed by (...) differing interests. -/- This book not only examines these complex challenges, but offers workable, policy-oriented solutions. International contributors cover theoretical approaches, new significant national legislation, the concept of traditional knowledge, provider and user country measures and common solutions. Exploring specific, salient examples from across the globe, the authors provide lessons for national regulation and the ongoing negotiations for an international ABS regime. Uniquely, this book also looks at the potential for 'horizontal' development of ABS law and policy, applying lessons from bilateral approaches to other national contexts. (shrink)

Numerous state laws and the federal Genetic Information Nondiscrimination Act (GINA) have been enacted to prevent or redress genetic discrimination in employment and health insurance, but laws protecting against genetic discrimination in life insurance have been less common and weak. Consequently, some individuals with a genetic risk of a serious illness have declined presymptomatic genetic testing, thereby decreasing their prevention and treatment options and increasing their mortality risk. In 2020, Florida became the first state to (...) prohibit life insurance companies from using the results of presymptomatic genetic tests in underwriting. Although the law was “only” intended to prevent genetic discrimination, a possible or even likely consequence of the law will be to encourage timely genetic testing by at‐rick individuals and thereby save lives. (shrink)

Mason and McCall Smith's classic textbook discusses the relationship of medical practice and ethics with the operation of the law. The subjects covered include natural and assisted reproduction, the impact of modern genetics on medicine, medical confidentiality, consent to medical treatment, the use of resources and problems surrounding death in the new medical era. It is of significance to anyone with an interest in the ethical and legal practice of medicine.

For the first time in the history of civilization, humans have procured the power to rewrite nature's book of life. Following the discovery of CRISPR and other key scientific developments at the dawn of the twenty-first century, humankind has-for better or worse-reached the Rubicon of precise genetic manipulation, which existed only in science fiction until now. Those familiar with genome editing understand its colossal power and potential to become a global transformative agent that surpasses the impact of electricity, the (...) atomic bomb, or the Internet. REWRITING NATURE is an interdisciplinary odyssey through the law, science, and policy of genome editing-the most significant breakthrough of our generation. The volume addresses a critical need to bridge gaps between law, science, and policy, and challenges the conventional, false dichotomy frequently associated with mutually exclusive normative roles for science and law. Through exploration of heuristic inquiries into an array of interdisciplinary fields, the book seeks to ignite thoughtful dialogues about authentic-rather than manufactured or sensationalized-issues raised by the technology. This timely resource is intended for keen audiences focused on venturing beyond the headlines and talking points to develop a deeper understanding of the prospects and challenges of genome editing. (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)

Pragmatic approaches to genetic testing are discussed and appraised. Whilst there are various schools of pragmatism, the Deweyan appraoch seems to be the most appreciated in bioethics as it allows a historical approach indebted to Hegel. This in turn allows the pragmatist to specify and balance principles in various contexts. There are problems with where to draw a line between what is referred to here as the micro- and macro-level of doing bioethics, unless one is simply to be classified (...) as a principlist. Whilst most discussions on genetics occur at a macro level, most specifying must be done also at a micro level – the clinical encounter. Whilst pragmatism encourages us to understand better social and scientific factors and puts into perspective statements like ‘playing God’, doubts are raised about the ‘consensus’ process and how one can put aside fundamental values such as the moral status of the embryo on which there is general disagreement. If those doing pragmatism do not endorse these values, there seems to be little ground for process and compromise with those who do. It seems therefore that pragmatism cannot ignore values, even those which are not endorsed by everyone. (shrink)

Technologies like CRISPR and gene drives are ushering in a new era of genetic engineering, wherein the technical means to modify DNA are cheaper, faster, more accurate, more widely accessible, and with more far-reaching effects than ever before. These cutting-edge technologies raise legal, ethical, cultural, and ecological questions that are so broad and consequential for both human and other-than-human life that they can be difficult to grasp. What is clear, however, is that the power to directly alter not just (...) a singular form of life but also the genetics of entire species and thus the composition of ecosystems is currently both inadequately regulated and undertheorized. In Gene Editing, Law, and the Environment, distinguished scholars from law, the life sciences, philosophy, environmental studies, science and technology studies, animal health, and religious studies examine what is at stake with these new biotechnologies for life and law, both human and beyond. (shrink)

This volume considers the many areas where medicine intersects with the law. Advances in medical research, reproductive science and genetics have given rise to unprecedented ethical and legal quandaries. These are reflected in chapters on cloning, organ donation, choosing genetic characteristics, and the use of Viagra.

May 21, 2018, marks the tenth anniversary of the signing into law of the Genetic Information Nondiscrimination Act. The Congressional deliberations for GINA were long and difficult. The original bill was introduced in 1995, and for many years, it did not look as if the bill would ever emerge from committee. Several of its provisions raised concerns for insurers, employers, and other stakeholders. After thirteen years, the controversial provisions were either deleted, revised, or clarified. At this ten‐year mark, it (...) is appropriate to take stock of GINA. In light of GINA's glacial legislative history, it is reasonable to start thinking about the necessity, wisdom, and feasibility of amending GINA or enacting new legislation to address unresolved or emerging issues of genetic discrimination and trends in genetics, genomics, precision medicine, and related technologies. (shrink)

The governance of human (germline) genome modification at the international and transnational level -- The regulation of human germline genome modification in Canada (E Kleiderman) -- The regulation of human germline genome modification in the United States (Kerry Macintosh) -- The regulation of human germline genome modification in Mexico (M Medina Arellano) -- The regulation of human germline genome modification in Europe (J Almqvist, C Romano) -- The regulation of human germline genome modification in the United Kingdom (J Lawford Davies) (...) -- The regulation of human germline genome modification in Germany (T Faltus). (shrink)

This book explores the scope, application and role of medical law, regulatory norms and ethics, and addresses key challenges introduced by contemporary advances in biomedical research and healthcare. While mindful of national developments, the handbook supports a global perspective in its approach to medical law. Contributors include leading scholars in both medical law and ethics, who have contributed specially commissioned pieces in order to present a critical overview and analysis of the current state of medical law and ethics. Each chapter (...) offers comprehensive coverage of longstanding and traditional topics in medical law and ethics, and offers dynamic insights into contemporary and emerging issues in this heavily debated field. Topics covered include: Bioethics, health and human rights Medical liability Law and emerging health technologies Public health law Personalized medicine The law and ethics of access to medicines in developing countries Medical research in the genome era Emerging legal and ethical issues in reproductive technologies This advanced level reference work will prove invaluable to legal practitioners, scholars, students and researchers in the disciplines of law, medicine, genetics, dentistry, theology, and medical ethics. (shrink)

Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current (...) governance structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used.--Back cover. (shrink)

Over the past years, one of the most contentious topics in policy debates on genetics has been the use of genetic testing in insurance. In the rush to confront concerns about potential abuses of genetic information, most countries throughout Europe and the US have enacted genetics-specific legislation for insurance. Drawing on current debates on the pros and cons of a genetics-specific legislative approach, this article offers empirical insight into how such legislation works out in insurance practice. (...) To this end, ethnographic fieldwork was done in the underwriting departments of Belgian insurance companies. Belgium was one of the first European countries introducing genetics-specific legislation in insurance. Although this approach does not allow us to speak in terms of ‘ the causal effects of the law’, it enables us to point to some developments in insurance practice that are quite different than the law’s original intentions. It will not only become clear that the Belgian genetics-specific legislation does not offer adequate solutions to the underlying issues it was intended for. We will also show that, while the legislation’s focus has been on the inadmissibility of genetic discrimination, at the same time differences are made in the insurance appraisal within the group of the asymptomatic ill. In other words, by giving exclusive legal protection to the group of genetic risks, other non-genetic risk groups are unintendedly being under-protected. From a policy point of view, studying genetics-specific legislation is especially valuable because it forces us to return to first principles: Which risks deserve our legal protection in insurance? Who do we declare our solidarity with? (shrink)

The research analyzes the process of formation of the ethics committee as a new institution in the system of regulation of genetic research. The external factors of this process are the increasing digitalization of medical and research practices, as well as the special situation that is developing in the field of genomic research and the use of genetic technologies, where issues of philosophy, jurisprudence and administration have generated many fundamentally new, and sometimes unexpected contexts. The author shows the (...) similarity and difference of approaches to the inclusion of the ethics committee in the national regulatory systems of different countries and determines the prospects for further integration of the new institution into normative and administrative-regulatory and law enforcement practices. The research applies all the main methods of system analysis and structural and functional analysis, as well as the comparative legal method. At the stage of generalization of empirical material, the author turns to the means and methods of philosophical phenomenology and phenomenological sociology. The study revealed that the ethics committee may have different institutional and regulatory functions in a variety of management and legal systems. Being hybrid in nature, the ethics committee performs various functions, and in various state legal systems and traditions it can combine elements of legislative, executive and judicial power. At times, the ethics committee may go beyond the scope of both a purely administrative and exclusively legal regulator. All this indicates that the integration of this institution into the legal system and into a variety of social practices is far from being completed. (shrink)

This book examines the field of bioethics from an international and regional legal perspective. It focuses on major international law documents such as the United Nations Universal Declaration on Bioethics and Human Rights and UNESCO declarations on human cloning and the human genome. Coverage of regional legal instruments includes the Council of Europe Convention on Human Rights and Biomedicine (the Oviedo Convention) and its Protocols on cloning, transplantation, and research with human beings. Work on surrogacy issues by the Hague Conference (...) on Private International Law is also discussed, as are some African regional legal instruments on biosafety, and stem cell research. (shrink)

Medical ethics and medical practice -- Public health and the state-patient relationship -- Health rights and obligations in the European Union -- Consent to treatment -- Liability for medical injury -- Medical confidentiality -- Genetic information and the law -- The management of infertility and childlessness -- The control of fertility -- Civil and criminal liability in reproductive medicine -- Health resources and dilemmas in treatment -- Treatment of the aged -- Mental health and human rights -- The body (...) as property -- Medical futility -- The diagnosis of death -- The donation of organs and transplantation -- Euthanasia and assistance in dying -- Biomedical human research and experimentation -- Research on children, fetuses and embryos. (shrink)

The Islamic government of Iran recently passed and announced a new law titled “Rejuvenation of the Population and Protection of the Family.” This legislation is a noteworthy example of biopolitics‐influenced biolaw. In terms of abortion, contraception, prenatal screening, and population control, this law clearly contrasts with women's fundamental rights and freedoms and has significant health‐related consequences for different sectors of the population. A historical review of the population policies of the Islamic Republic of Iran shows the occurrence of (...) multiple abrupt and radical changes in such policies over the past four decades. This new law, promoted by religious biopolitics, is the most recent example, and places stringent limits on abortion. According to it, all decisions concerning abortion must be made in courts rather than in health clinics. Such courts are typically presided over by male religious scholars. This law also limits prenatal screening to the degree that will increase the rate of genetic defects, especially in the population's lower socioeconomic strata. By strictly limiting access to contraception, this law will increase the rate of unwanted pregnancies and sexually transmitted diseases. This paper argues that such an influence of biopolitics on biolaw contrasts with the principles of bioethics. Still, Iran's current institution of bioethics cannot address it effectively. Therefore, a new model of interaction between bioethics, biopolitics, and biolaw is needed to prevent the detrimental consequences of such pieces of legislation. Such a paradigm shift is demanded by the current “Woman, Life, Freedom” movement of the Iranian people. (shrink)

Along with many jurisdictions, Australia is struggling with the unique issues raised by genetic information in the context of privacy laws and medical ethics. Although the consequences of disclosure of most private information are generally confined to individuals, disclosure of genetic information has far-reaching consequences, with a credible argument that genetic relatives have a right to know about potential medical conditions. In 2006, the Privacy Act was amended to permit disclosure of an individual's genetic information, without (...) their consent, to genetic relatives, if it was to avoid or mitigate serious illness. Unfortunately, additional amendments required for operation of the disclosure amendment were overlooked. Public Interest Determinations —delegated legislation issued by the privacy commissioner—have, instead, been used to exempt healthcare providers from provisions which would otherwise make disclosure unlawful. This paper critiques the PIDs using documents obtained under the Freedom of Information Act—specifically the impact of both the PIDs and the disclosure amendment on patients and relatives—and confidentiality and the procedural validity of subordinate laws regulating medical privacy. (shrink)