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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.
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.
Medicine is a complex social institution which includes biomedical research, clinical practice, and the administration and organization of health care delivery. As such, it is amenable to analysis from a number of disciplines and directions. The present volume is composed of revised papers on the theme of "Responsibility in Health Care" presented at the Eleventh Trans Disciplinary Symposium on Philosophy and Medicine, which was held in Springfield, illinois on March 16-18, 1981. The collective focus of these essays is the clinical practice of medicine and the themes and issues related to questions of responsibility in that setting. Responsibility has three related dimensions which make it a suitable theme for an inquiry into clinical medicine: (a) an external dimension in legal and political analysis in which the State imposes penalties on individuals and groups and in which officials and governments are held accountable for policies; (b) an internal dimension in moral and ethical analysis in which individuals take into account the consequences of their actions and the criteria which bear upon their choices; and (c) a comprehensive dimension in social and cultural analysis in which values are ordered in the structure of a civilization ([8], p. 5). The title "Responsibility in Health Care" thus signifies a broad inquiry not only into the ethics of individual character and actions, but the moral foundations of the cultural, legal, political, and social context of health care generally.
Inside today's data-driven personalized medicine, and the time, effort, and information required from patients to make it a reality Medicine has been personal long before the concept of “personalized medicine” became popular. Health professionals have always taken into consideration the individual characteristics of their patients when diagnosing, and treating them. Patients have cared for themselves and for each other, contributed to medical research, and advocated for new treatments. Given this history, why has the notion of personalized medicine gained so much traction at the beginning of the new millennium? Personalized Medicine investigates the recent movement for patients’ involvement in how they are treated, diagnosed, and medicated; a movement that accompanies the increasingly popular idea that people should be proactive, well-informed participants in their own healthcare. While it is often the case that participatory practices in medicine are celebrated as instances of patient empowerment or, alternatively, are dismissed as cases of patient exploitation, Barbara Prainsack challenges these views to illustrate how personalized medicine can give rise to a technology-focused individualism, yet also present new opportunities to strengthen solidarity. Facing the future, this book reveals how medicine informed by digital, quantified, and computable information is already changing the personalization movement, providing a contemporary twist on how medical symptoms or ailments are shared and discussed in society. Bringing together empirical work and critical scholarship from medicine, public health, data governance, bioethics, and digital sociology, Personalized Medicine analyzes the challenges of personalization driven by patient work and data. This compelling volume proposes an understanding that uses novel technological practices to foreground the needs and interests of patients, instead of being ruled by them.
Interdisciplinarity has become a buzzword in academia, as research universities funnel their financial resources toward collaborations between faculty in different disciplines. In theory, interdisciplinary collaboration breaks down artificial divisions between different departments, allowing more innovative and sophisticated research to flourish. But does it actually work this way in practice? Investigating Interdisciplinary Collaboration puts the common beliefs about such research to the test, using empirical data gathered by scholars from the United States, Canada, and Great Britain. The book’s contributors critically interrogate the assumptions underlying the fervor for interdisciplinarity. Their attentive scholarship reveals how, for all its potential benefits, interdisciplinary collaboration is neither immune to academia’s status hierarchies, nor a simple antidote to the alleged shortcomings of disciplinary study. Chapter 10 is available Open Access here (https://www.ncbi.nlm.nih.gov/books/NBK395883)
In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.
Accounts of solidarity typically defend it in teleological or loyalty terms, justifying it by invoking its goal of promoting justice or its expression of support for a shared community. Such solidarity seems to be a moral option rather than an obligation. In contrast, A Moral Theory of Solidarity develops a deontological theory grounded in equity. With extended reflection on the Spanish conquest of the Americas and the US Civil Rights movement, Kolers defines solidarity as political action on others' terms. Unlike mere alliances and coalitions, solidarity involves a disposition to defer to others' judgment about the best course of action. Such deference overrides individual conscience. Yet such deference is dangerous; a core challenge is then to determine when deference becomes appropriate. Kolers defends deference to those who suffer gravest inequity. Such deference constitutes equitable treatment, in three senses: it is Kantian equity, expressing each person's equal status; it is Aristotelian equity, correcting general rules for particular cases; and deference is 'being an equitable person, ' sharing others' fate rather than seizing advantages that they are denied. Treating others equitably is a perfect duty; hence solidarity with victims of inequity is a perfect duty. Further, since equity is valuable in itself, irrespective of any other goal it might promote, such solidarity is intrinsically valuable, not merely instrumentally valuable. Solidarity is then not about promoting justice, but about treating people justly. A Moral Theory of Solidarity engages carefully with recent work on equity in the Kantian and Aristotelian traditions, as well as the demandingness of moral duties, collective action, and unjust benefits, and is a major contribution to a field of growing interest.
This book presents cutting edge research on the new ethical challenges posed by biomedical Big Data technologies and practices. ‘Biomedical Big Data’ refers to the analysis of aggregated, very large datasets to improve medical knowledge and clinical care. The book describes the ethical problems posed by aggregation of biomedical datasets and re-use/re-purposing of data, in areas such as privacy, consent, professionalism, power relationships, and ethical governance of Big Data platforms. Approaches and methods are discussed that can be used to address these problems to achieve the appropriate balance between the social goods of biomedical Big Data research and the safety and privacy of individuals. Seventeen original contributions analyse the ethical, social and related policy implications of the analysis and curation of biomedical Big Data, written by leading experts in the areas of biomedical research, medical and technology ethics, privacy, governance and data protection. The book advances our understanding of the ethical conundrums posed by biomedical Big Data, and shows how practitioners and policy-makers can address these issues going forward.