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Individualized Medicine Between Hype and Hope
"Individualized medicine" is a catchphrase currently used to denote efforts in medical research and practice to establish tailored healthcare. The vision of "personalized" medicine has proved to be highly ambivalent, reflecting hype and hope - compared to the great expectations only very few applications have been realized up to now. The contributions to this volume discuss the challenges for patients, doctors, and the healthcare system and examine ethical and societal issues arising from one the most promising and most controversial developments in medical science and biotechnology. (Series: Medizin und Gesellschaft - Vol. 19)
Trust in Biobanking
Biobanks are promising instruments of biomedical research and of transnational medicine in particular. Ethical, legal and social issues associated with biobanking, however, have recently led to a more critical view on this concept. All efforts addressing these concerns have been grounded on well-established standards of biomedical ethics such as informed consent procedures, protection of individual autonomy, benefit sharing etc. By additionally highlighting the widely neglected aspect of trust, this book aims at broadening the horizon of the ELSI-debate and thus filling a gap in current research on biobanking. The contributions of leading experts and junior researchers cover a wide field of disciplines relevant for biobanking including law, ethics, medicine, public health, social sciences, philosophy and theology.
Between Moral Hazard and Legal Uncertainty
Genome Editing Techniques are seen to be at the frontier of current research in the field of emerging biotechnologies. The latest revolutionary development, the so-called CRISPR technology, represents a paradigmatic example of the ambiguity of such techniques and has resulted in an international interdisciplinary debate on whether or not it is necessary to ban the application of this technique by means of a moratorium on its use for human germline modifications, particularly in human embryos in the reproduction process. However, given that other germline engineering techniques like mitochondrial (mt) DNA transfer techniques are already permitted and applied, the question arises what lies at the root of the apparent social unease about the modification of the human germline by Genome Editing Techniques like CRISPR. Against this background, the book seeks to make a substantial contribution to the current debate about a responsible and participatory framework for research on emerging biotechnologies by analysing underlying perceptions, attitudes, arguments and the reasoning on Genome Editing Techniques.
Women, Biomedical Research and Art
Die Studie widmet sich intersektionalen Verletztbarkeiten, sozio-geografischen und rassistischen Ungerechtigkeiten sowie dem Traumapotenzial von Reproduktionsmedizin, Menschenhandel und Schwarzmarkt-Organhandel. Mittels eines empirischen, kritisch-diskursanalytischen, künstlerischen und philosophisch-theoretischen Zugangs entwickelt die interdisziplinäre Studie praktische kreative Werkzeuge für eine Pädagogik, die Würde und Integrität betont und die Menschenrechte im Alltag der betroffenen Bevölkerung unterstützt.
Synthetic Biology
Assessing synthetic biology from a societal and ethical perspective is not only a matter of determining possible harms and benefits of synthetic biology applications. Synthetic biology also incorporates a specific technoscientific understanding of its research agenda and its research objects that has philosophical and ethical implications. This edited volume sets out to explore and evaluate these synthetic biology worldviews and it proposes appropriate governance measures. In addition, legal challenges are discussed.
Epigenetics
Modern epigenetics unites scientists from life sciences, organic chemistry as well as computer and engineering sciences to find an answer to the question of how environmental influences can have a lasting effect on gene expression, maybe even into the next generations. This volume examines from an interdisciplinary perspective the ethical, legal and social aspects of epigenetics.
The Big Data Agenda
This book highlights that the capacity for gathering, analysing, and utilising vast amounts of digital (user) data raises significant ethical issues. Annika Richterich provides a systematic contemporary overview of the field of critical data studies that reflects on practices of digital data collection and analysis. The book assesses in detail one big data research area: biomedical studies, focused on epidemiological surveillance. Specific case studies explore how big data have been used in academic work. The Big Data Agenda concludes that the use of big data in research urgently needs to be considered from the vantage point of ethics and social justice. Drawing upon discourse ethics and critical data studies, Richterich argues that entanglements between big data research and technology/ internet corporations have emerged. In consequence, more opportunities for discussing and negotiating emerging research practices and their implications for societal values are needed.
Hope
In our times hope is called into question. The disintegration of economic systems, of states and societies, families, friendships, distrust in political structures, forces us to ask if hope has disappeared from the experience of today's men and women. In August 2019, up to 240 participants met at the international theological congress in Bratislava, Slovakia. The main lectures, congress sections and workshops aimed to provide a space for thinking about the central theme of hope in relation to philosophy, politics, pedagogy, social work, charity, interreligious dialogue and ecumenism.
Protecting Genetic Privacy in Biobanking Through Data Protection Law
Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.
Health Law
Health Law: Frameworks and Context adopts a theoretically informed and principles-based approach to examining health law. Appealing to students and academic scholars alike, the text moves beyond traditional medical law frameworks to provide a broader contextual understanding of the way in which law intersects with health.
