"Systematically improving patient safety is of the utmost importance, but it is also an extremely complex and challenging task. This illuminating study evaluates the role of professionalism, regulatio
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.
This book argues against the legalisation of voluntary euthanasia and/or physician-assisted suicide on the ground that, even if they were ethically defensible in certain 'hard cases', neither could be effectively controlled by law. It maintains that the experience of legalisation in the Netherlands, Belgium and Oregon lends support to the two 'slippery slope' arguments against legalisation, the 'empirical' and the 'logical'. The empirical argument challenges the feasibility of drafting and enforcing adequate safeguards against abuse and mistake; the logical argument shows that acceptance of the case for euthanasia in the case of suffering patients who request it logically involves acceptance of euthanasia for suffering patients who are unable to request it, such as infants and those with advanced dementia.
Proposing a new view of global justice based on natural law, this book presents a discussion of the key ethical values in contemporary medicine and health, notably in relation to neglected diseases like malaria, Ebola and Zika. The lack of treatments for such diseases points to a global health crisis. Thana Cristina de Campos provides a general framework, based on global commutative justice, for discussion of the ethical responsibilities of international stakeholders, mapping the varying duties they have, and their content and force. She also addresses the urgent need for reforms to the international legal rules on bioethics, notably the system of intellectual property rights. These ideas will be of interest to those who are looking for a more nuanced view of the human right to health than that provided by advocates in the globalist mainstream.
How best to manage risk involving multi-valued human biological materials is the overarching theme of this book, which draws on the sourcing and supply of blood as a case study. Blood has ethical, social, scientific and commercial value. This multi-valuing process presents challenges in terms of managing risk, therefore making it ultimately a matter for political responsibility. This is highlighted through an examination of the circumstances that led to HIV blood contamination episodes in the US, England and France, as well as their consequences. The roles of scientific expertise and innovation in managing risks to the blood system are also analysed, as is the increased use of precautionary and legal strategies in the post-HIV blood contamination era. Finally, consideration is given to a range of policy and legal strategies that should underpin effective risk governance involving multi-valued human biological materials.
Recent legal developments challenge how valid the concept of mental capacity is in determining whether individuals with impairments can make decisions about their care and treatment. Kong defends a concept of mental capacity but argues that such assessments must consider how relationships and dialogue can enable or disable the decision-making abilities of these individuals. This is thoroughly investigated using an interdisciplinary approach that combines philosophy and legal analysis of the law in England and Wales, the European Court of Human Rights, and the United Nations Convention on the Rights of Persons with Disabilities. By exploring key concepts underlying mental capacity, the investigation concludes that both primary relationships and capacity assessments themselves must display key competencies to ensure that autonomy skills are promoted and encouraged. This ultimately provides scope for justifiable interventions into disabling relationships and articulates the dialogical
The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers the right to know and the right not to know about your own and others' genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media.
Reproductive science continues to revolutionise reproduction and propel us further into uncharted territories. The revolution signalled by the birth of Louise Brown after IVF in 1978, prompted governments across Europe and beyond into regulatory action. Forty years on, there are now dramatic and controversial developments in new reproductive technologies. Technologies such as uterus transplantation that may enable unisex gestation and babies gestated by dad; or artificial wombs that will completely divorce reproduction from the human body and allow babies to be gestated by machines, usher in a different set of legal, ethical and social questions to those that arose from IVF. This book revisits the regulation of assisted reproduction and advances the debate on from the now much-discussed issues that arose from IVF, offering a critical analysis of the regulatory challenges raised by new reproductive technologies on the horizon.
Continuous sedation until death (sometimes referred to as terminal sedation or palliative sedation) is an increasingly common practice in end-of-life care. However, it raises numerous medical, ethical, emotional and legal concerns, such as the reducing or removing of consciousness (and thus potentially causing 'subjective death'), the withholding of artificial nutrition and hydration, the proportionality of the sedation to the symptoms, its adequacy in actually relieving symptoms rather than simply giving onlookers the impression that the patient is undergoing a painless 'natural' death, and the perception that it may be functionally equivalent to euthanasia. This book brings together contributions from clinicians, ethicists, lawyers and social scientists, and discusses guidelines as well as clinical, emotional and legal aspects of the practice. The chapters shine a critical spotlight on areas of concern and on the validity of the justifications given for the practice, including in
There is an understandable tendency or desire to attribute blame when patients are harmed by their own healthcare. However, many cases of iatrogenic harm involve little or no moral culpability. Even when blame is justified, an undue focus on one individual often deflects attention from other important factors within the inherent complexity of modern healthcare. This revised second edition advocates a rethinking of accountability in healthcare based on science, the principles of a just culture, and novel therapeutic legal processes. Updated to include many recent relevant events, including the Keystone Project in the USA and the Mid Staffordshire scandal in the UK, this book considers how the concepts of a just culture have been successfully implemented so far, and makes recommendations for best practice. This book will be of interest to anyone concerned with patient safety, medical law and the regulation of healthcare.
Proposing a new view of global justice based on natural law, this book presents a discussion of the key ethical values in contemporary medicine and health, notably in relation to neglected diseases like malaria, Ebola and Zika. The lack of treatments for such diseases points to a global health crisis. Thana Cristina de Campos provides a general framework, based on global commutative justice, for discussion of the ethical responsibilities of international stakeholders, mapping the varying duties they have, and their content and force. She also addresses the urgent need for reforms to the international legal rules on bioethics, notably the system of intellectual property rights. These ideas will be of interest to those who are looking for a more nuanced view of the human right to health than that provided by advocates in the globalist mainstream.
Access to medical treatment for trans youth occupies a haphazard and dynamic legal landscape. In this comprehensive scholarly analysis of the historical and current legal principles, Steph Jowett examines the medico-legal nexus of regulation of this healthcare in Australia and in England and Wales. This is informed by an in-depth discussion of the medical literature on treatment for trans youth, including clinical guidelines, the outcomes of treatment and outcomes for trans youth who are unable to be treated. With illustrative examples and clear language, Jowett argues that legal barriers to clinical practice should be congruent with and reflect the current state of medical knowledge. Not only does Jowett assess the extent to which key legal decisions have been consistent with medical knowledge in the past, but she offers a nuanced, comparative perspective that will inform reform efforts in the future.
This book argues against the legalisation of voluntary euthanasia and/or physician-assisted suicide on the ground that, even if they were ethically defensible in certain 'hard cases', neither could be effectively controlled by law. It maintains that the experience of legalisation in the Netherlands, Belgium and Oregon lends support to the two 'slippery slope' arguments against legalisation, the 'empirical' and the 'logical'. The empirical argument challenges the feasibility of drafting and enforcing adequate safeguards against abuse and mistake; the logical argument shows that acceptance of the case for euthanasia in the case of suffering patients who request it logically involves acceptance of euthanasia for suffering patients who are unable to request it, such as infants and those with advanced dementia.
The Human Embryo in vitro explores the ways in which UK law engages with embryonic processes under the Human Fertilisation and Embryology Act 1990 (as amended), the intellectual basis of which has not been reconsidered for almost thirty years. McMillan argues that in regulating 'the embryo' – that is, a processual liminal entity in itself - the law is regulating for uncertainty. This book offers a fuller understanding of how complex biological processes of development and growth can be better aligned with a legal framework that purports to pay respect to the embryo while also allowing its destruction. To do so it employs an anthropological concept, liminality, which is itself concerned with revealing the dynamics of process. The implications of this for contemporary regulation of artificial reproduction are fully explored, and recommendations are offered for international regimes on how they can better align biological reality with social policy and law.
