About this book
The Ethics of Research Biobanking investigates some of the ethical, legal and social challenges raised by research biobanking. In the first part of the book the authors pursue the different regulatory options envisaged within a normative terrain dictated by different conceptions and interpretations of the informed consent doctrine. In the second part a completely new approach is explored. The authors investigate the conceptual potential of different analogies outside medical research used to depict people's change and exchange of valuables between themselves and a common institution. The book is aimed at both academic and professional audiences (biobank curators, biobank researchers, ethicists, gene-epidemiologists, health law experts, philosophers, social scientists and advanced and graduate students in the relevant disciplines) as well as health and research regulators, ministries, politicians and the general public.
Content Level » Research
Keywords » biobanking - ethics - health law - research biobanking
Related subjects » Cell Biology - Epidemiology - Human Genetics - Medicine
Table of contents
Preface.- Contents.- Introduction.-
Part I Research biobanking: The traditional approach.- Consent to biobank research: one size fits all?- What No One Knows Can't Hurt you: The limits of informed consent in the emerging world of Biobanking.- Users and uses of the biopolitics of consent: a study of DNA banks.- Information rights on the edge of ignorance.- The Dubious Uniqueness of Genetic Information.- Duties and rights of biobank participants: Principled autonomy, consent, voluntariness and privacy.- Biobanking and Disclosure of Research Results: Addressing the tension between professional boundaries and moral intuition.- Biobanks and our common good.- Trust, Distrust and Co-Production: The Relationship between Research Biobanks and Donors.- Scientific citizenship, benefit, and protection in population based research.-
Part II Research biobanking: towards a new conceptual approach.- Mapping the language of research biobanking: an analogical approach.- The use of analogical reasoning in umbilical cord blood biobanking.- The Alexandria Plan: Creating Libraries for Human Tissue Research and Therapeutic Use.- The Art of Biocollections.- The Health Dugnad: Biobank participation as the solidarity pursuit of the common good.- Embodied gifting: Reflections on the role of information in biobank recruitment.- Conscription to biobank research?- Ownership rights in research biobanks: Do we need a new kind of "biological property"?- Legal challenges and strategies in the regulation of research biobanking.- Annexation of life: The biopolitics of industrial biology.- In the ruins of Babel: Should biobank regulations be harmonized?
From the reviews: “This book is composed of articles that reflect an interdisciplinary and transnational approach to the issues surrounding research biobanking. … The editors intend the book for professionals and regulators involved in research as well as academics and the general public. … The two-part structure … provides valuable information to readers at all levels of prior exposure to the issue of biobanking.” (Kelly K. Dineen, Doody’s Review Service, December, 2009)