Human Population Genetic Research in Developing Countries


Book Description

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




Evaluating Human Genetic Diversity


Book Description

This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.




Equitable Access to Human Biological Resources in Developing Countries


Book Description

The main question explored by the book is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed in such a way as to achieve equity for vulnerable populations in developing countries? The book situates the field of genomic and genetic research within global health and research frameworks, describing the concerns that have been raised about the potential unfairness in exchanges during recent decades. Access to and sharing in the benefits of human biological resources are aspects not regulated by any international legal framework such as the Convention on Biological Diversity, which applies only to the exchange of plants, animals and microorganisms, as well as to associated traditional knowledge. Examples of genetic research perceived as exploitative are provided in order to illustrate the legal vacuum concerning the global governance of human genetic resources. The main conclusions drawn from the legal and ethical analysis are: • Benefit sharing is crucial in order to avoid the exploitation of developing countries in human genetic research. • With functioning research ethics committees, undue inducement is less of a concern in genetic research than in other areas of medical research (e.g. clinical trials). • Concerns remain over research involving indigenous populations; accordingly, recommendations are provided. In drawing these conclusions, the book addresses in detail a highly pressing topic in global bioethics and international law. In this regard, it combines bioethical arguments with jurisprudence, in particular with reference to the law of equity and the legal concepts of duress (coercion), unconscionable dealing, and undue inducement.




The Future of the Public's Health in the 21st Century


Book Description

The anthrax incidents following the 9/11 terrorist attacks put the spotlight on the nation's public health agencies, placing it under an unprecedented scrutiny that added new dimensions to the complex issues considered in this report. The Future of the Public's Health in the 21st Century reaffirms the vision of Healthy People 2010, and outlines a systems approach to assuring the nation's health in practice, research, and policy. This approach focuses on joining the unique resources and perspectives of diverse sectors and entities and challenges these groups to work in a concerted, strategic way to promote and protect the public's health. Focusing on diverse partnerships as the framework for public health, the book discusses: The need for a shift from an individual to a population-based approach in practice, research, policy, and community engagement. The status of the governmental public health infrastructure and what needs to be improved, including its interface with the health care delivery system. The roles nongovernment actors, such as academia, business, local communities and the media can play in creating a healthy nation. Providing an accessible analysis, this book will be important to public health policy-makers and practitioners, business and community leaders, health advocates, educators and journalists.




Revisiting the Regulation of Human Fertilisation and Embryology


Book Description

The Human Fertilisation and Embryology Act 2008 was a major update to the UK’s laws on the use and regulation of reproductive technology and assisted reproduction. Since the enactment of the new law, the sector’s regulatory body, the Human Fertilisation and Embryology Authority (HFEA), has also consulted on various related topics including barriers to egg and sperm donation in the UK, multiple births/single embryo transfer and using IVF technology to prevent mitochondrial disease. This book critically considers recent developments in human fertilisation legislation, asking whether the 2008 Act has achieved its stated aim of being fit for purpose. Bringing together a range of international experts, the book evaluates the fresh risks and challenges emerging from both established and existing technologies and techniques in the field of human fertilisation and embryology, as well as offering valuable insights into the social and regulatory challenges that lie ahead. Key topics include problems with DIY assisted conception; the lack of reform in respect of the regulation of surrogacy arrangements; and mitochondrial DNA transfer. As a review of the status of assisted reproduction legislation, this book will be of great use and interest to students, researchers and practitioners in medical law, bioethics, medicine and child welfare.




Human Genome Editing


Book Description

Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.




Stem Cell Research and the Collaborative Regulation of Innovation


Book Description

Hopes are high that stem cell (SC) research will lead to treatments and cures for some of the most serious diseases affecting humankind today. SC science has been used in a treatment setting in the replacement of patients’ windpipes and in restoring sight to patients who were blind in one eye and in future it is hoped that when the body is injured it will be able to be stimulated to produce those types of SCs necessary to repair the particular damage caused. In the meantime, research into specific treatments for a wide range of serious conditions is being undertaken including Alzheimer’s disease, cancer, and diabetes. The book considers the regulatory governance of stem cell research, setting out a readily understandable account of the science and the challenges it poses for regulators as the research is increasingly being clinically applied. It provides a critical account of those elements of a regulatory system which will be required for any jurisdiction aiming to facilitate innovative and productive SC research while maintaining appropriate ethical and legal controls. The book addresses the specific failings in the current regulatory approach to SC research in the UK and goes on to look at the regulatory approaches in the US. The book systematically analyses the roles and responsibilities of the three key participants who collaborate in this process: regulators, scientists and tissue providers, arguing that a regulatory system which fails to recognise and facilitate the vital role which each of these three groups plays runs the risk of impairing the chances of the hopes for SC research being realised. The book places a particular emphasis on ensuring that those who contribute their bodily tissues to this endeavour are treated fairly, involving a recognition that their tissues are their property.




Autonomy and Pregnancy


Book Description

Technology has come to dominate the modern experience of pregnancy and childbirth, but instead of empowering pregnant women, technology has been used to identify the foetus as a second patient characterised as a distinct entity with its own needs and interests. Often, foetal and the woman’s interests will be aligned, though in legal and medical discourses the two ‘patients’ are frequently framed as antagonists with conflicting interests. This book focuses upon the permissibility of encroachment on the pregnant woman’s autonomy in the interests of the foetus. Drawing on the law in England & Wales, the United States of America and Germany, Samantha Halliday focuses on the tension between a pregnant woman’s autonomy and medical actions taken to protect the foetus, addressing circumstances in which courts have declared medical treatment lawful in the face of the pregnant woman’s refusal of consent. As a work which calls into question the understanding of autonomy in prenatal medical care, this book will be of great use and interest to students, researchers and practitioners in medical law, comparative law, bioethics, and human rights.




Saviour Siblings


Book Description

Genetic screening technologies involving pre-implantation genetic diagnosis (PGD) raise particular issues about selective reproduction and the welfare of the child to be born. How does selection impact on the identity of the child who is born? Are children who are selected for a particular purpose harmed or treated as commodities? How far should the state interfere with parents’ reproductive choices? Currently, concerns about the welfare of the child in selective reproduction have focused on the individual interests of the child to be born. This book re-evaluates the welfare of the child through the controversial topic of saviour sibling selection. Drawing on relational feminist and communitarian ethics, Michelle Taylor-Sands argues that the welfare of the child to be born is inextricably linked with the welfare of his/her family. The author proposes a relational model for selective reproduction based on a broad conception of the welfare of the child that includes both individual and collective family interests. By comparing regulation in the UK and Australia, the book maps out how law and policy might support a relational model for saviour sibling selection. With an interdisciplinary focus, Saviour Siblings: A Relational Approach to the Welfare of the Child in Selective Reproduction will be of particular interest to academics and students of bioethics and law as well as practitioners and policymakers concerned with the ethics of selective reproduction.




Pioneering Healthcare Law


Book Description

This book celebrates Professor Margaret Brazier’s outstanding contribution to the field of healthcare law and bioethics. It examines key aspects developed in Professor Brazier’s agenda-setting body of work, with contributions being provided by leading experts in the field from the UK, Australia, the US and continental Europe. They examine a range of current and future challenges for healthcare law and bioethics, representing state-of-the-art scholarship in the field. The book is organised into five parts. Part I discusses key principles and themes in healthcare law and bioethics. Part II examines the dynamics of the patient–doctor relationship, in particular the role of patients. Part III explores legal and ethical issues relating to the human body. Part IV discusses the regulation of reproduction, and Part V examines the relationship between the criminal law and the healthcare process. Chapter 10 of this book is freely available as a downloadable Open Access PDF at http://www.taylorfrancis.com under a Creative Commons Attribution-Non Commercial-No Derivatives (CC-BY-NC-ND) 3.0 license.