The Ethics of Research Biobanking

✍ Scribed by Bjørn Hofmann, Jan Helge Solbakk, Søren Holm (auth.), Dr. Jan Helge Solbakk, Dr. Søren Holm, Dr. Bjørn Hofmann (eds.)

• Publisher: Springer US
• Year: 2009
• Tongue: English
• Leaves: 359
• Edition: 1
• Category: Library

✦ Synopsis

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.

✦ Table of Contents

Front Matter....Pages i-xviii
Front Matter....Pages 1-1
Consent to Biobank Research: One Size Fits All?....Pages 3-23
What No One Knows Cannot Hurt You: The Limits of Informed Consent in the Emerging World of Biobanking....Pages 25-32
Users and Uses of the Biopolitics of Consent: A Study of DNA Banks....Pages 33-47
Information Rights on the Edge of Ignorance....Pages 49-56
The Dubious Uniqueness of Genetic Information....Pages 57-67
Duties and Rights of Biobank Participants: Principled Autonomy, Consent, Voluntariness and Privacy....Pages 69-84
Biobanking and Disclosure of Research Results: Addressing the Tension Between Professional Boundaries and Moral Intuition....Pages 85-99
Biobanks and Our Common Good....Pages 101-114
Trust, Distrust and Co-production: The Relationship Between Research Biobanks and Donors....Pages 115-130
Scientific Citizenship, Benefit, and Protection in Population-Based Research....Pages 131-141
Front Matter....Pages 143-143
Mapping the Language of Research Biobanking: An Analogical Approach....Pages 145-158
The Use of Analogical Reasoning in Umbilical Cord Blood Biobanking....Pages 159-172
The Alexandria Plan: Creating Libraries for Human Tissue Research and Therapeutic Use....Pages 173-193
The Art of Biocollections....Pages 195-218
The Health Dugnad: Biobank Participation as the Solidary Pursuit of the Common Good....Pages 219-236
Embodied Gifting: Reflections on the Role of Information in Biobank Recruitment....Pages 237-253
Conscription to Biobank Research?....Pages 255-262
Ownership Rights in Research Biobanks: Do We Need a New Kind of ‘Biological Property’?....Pages 263-276
Legal Challenges and Strategies in the Regulation of Research Biobanking....Pages 277-313
Annexation of Life: The Biopolitics of Industrial Biology....Pages 315-329
Front Matter....Pages 143-143
In the Ruins of Babel: Should Biobank Regulations be Harmonized?....Pages 331-343
Back Matter....Pages 345-357

✦ Subjects

Theory of Medicine/Bioethics; Medicine/Public Health, general; Human Genetics; Cell Biology; Epidemiology