The Ethics of Research Biobanking

This book investigates some of the ethical, legal and social challenges raised by research biobanking. It presents a comprehensive look at the issue of biobanking in an analogical approach and clarifies the institutional nature of research biobanks.

Biobanking, i.e. storage of biological samples or data emerging from such samples for diagnostic, therapeutic or research purposes, has been going on for decades. However, it is only since the mid 1990s that these activities have become the subject of considerable public attention, concern and debate. This shift in climate is due to several factors. The purpose of this book is to investigate some of the ethical, legal and social challenges raised by research biobanking in its different modern forms and formats. The issues raised by research biobanking in its modern form can be divided into four main clusters: how biological materials are entered into the bank; research biobanks as institutions; under what conditions researchers can access materials in the bank, and problems concerning ownership of biological materials and of intellectual property arising from such materials; and how the information is collected and stored, e.g. access-rights, disclosure, confidentiality, data security and data protection.

Presents a comprehensive look at the issue of biobanking in an analogical approach Critically assesses the traditional regulatory approach to research biobanking and presents alternative ways of conceiving and regulating research biobanks Clarifies the institutional nature of research biobanks

Klappentext

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.

Inhalt
Research Biobanking: The Traditional Approach.- Consent to Biobank Research: One Size Fits All?.- What No One Knows Cannot 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.- 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 Solidary 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?.