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Libros > Derecho / Nuevas Tecnologías / NUEVAS TECNOLOGÍAS ( GENERAL ) > The governance of biobanks in the digital society

The governance of biobanks in the digital society
From the identification of unsolved bioethical issues to the conceptualisation of a model

The governance of biobanks in the digital society. From the identification of unsolved bioethical issues to the conceptualisation of a model
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  • ISBN: 978-84-1085-703-2
  • EAN: 9788410857032
  • Editorial: Aranzadi
  • Fecha de la edición:
  • Número de la edición: 1ª
  • Colección: Estudios
  • Encuadernación: Tapa blanda o Bolsillo
  • Nº Pág.: 177
  • Idiomas: Inglés

Materias:

"The Governance of Biobanks in the Digital Society" explores the evolving role of biobanks within data-driven biomedical research, spotlighting the ethical, legal, and societal challenges. The book conceptualizes a model for biobank governance, emphasizing transparency, data protection, and public participation. Bridging gaps between existing regulations and ethical guidelines, it proposes solutions to unsolved bioethical issues by redefining governance from a participant-data perspective.

Rooted in bioethical principles, this framework aims at effective integration with digital innovations while safeguarding constitutional values and public trust. 

The book offer:

Conceptualizes an ethical governance framework for biobanks. 
Aligns biobank governance with the digital health data paradigm. 
Advocates for transparency, data protection, and inclusive participation.

LIST OF ABBREVIATIONS .......................................................................... 15
INTRODUCTION .......................................................................................... 17
Rationale and aims ....................................................................................... 19
Methodology and references ...................................................................... 21
Outline ............................................................................................................ 21
CHAPTER 1
PREVIOUS QUESTIONS............................................................................ 23
1. Biobanks in philosophy and bioethics ........................................... 24
1.1. The contribution of bioethics........................................................ 24
1.2. The role of philosophy................................................................... 31
1.3. A conceptual framework............................................................... 33
2. Ethics of biobank governance........................................................... 39
2.1. From political philosophy to biomedical research......................... 40
2.2. Responsible research and innovation in the European Union ..... 46
3. Biobanks in data-driven biomedical research in a digital society.. 50
3.1. Epistemological and practical impacts......................................... 54
3.2. Ethical implications...................................................................... 60
a) Privacy and data protection ............................................. 61
b) Informed consent ............................................................... 65
c) Ethical oversight................................................................. 67
Conclusions.................................................................................................... 69
CHAPTER 2
IDENTIFICATION OF THE UNSOLVED BIOETHICAL ISSUES
RELATED TO BIOBANK GOVERNANCE............................................. 73
1. Crisis of the autonomy principle ..................................................... 74
2. Commodification of human bodies ................................................. 79
3. Inadequate regulatory guidelines.................................................... 88
4. Inadequate protection of biobank participants............................. 96
5. Inadequate informed consent procedures and forms .................. 99
6. Inadequate evaluation for accessing biobanks ............................. 107
Conclusions.................................................................................................... 114
CHAPTER 3
ANALYSIS OF THE ETHICAL FRAMEWORK OF REFERENCE
FOR BIOBANK GOVERNANCE.............................................................. 117
1. Texts of reference................................................................................. 119
2. Biobank governance versus the ethical provisions of reference 131
CHAPTER 4
PARS DESTRUENS: A DECONSTRUCTION OF THE PHENOMENON ........................................................................................... 139
1. Four ways of understanding biobanks ........................................... 140
a. The biobank as a collection of human biological samples and associated data........................................................................................ 141
b. The biobank as a technoscientific and research infrastructure........ 143
c. The biobank as a vantage point for contemporary biomedical research governance............................................................................ 145
d. The biobank as a testing ground for revising ethics in biomedical research ............................................................................................ 147
2. From a medical vision to a social vision of biobanks .................. 149
3. Challenges and goals for good biobank governance............................ 153
CHAPTER 5
PARS CONSTRUENS: MODEL OF GOVERNANCE AND PRINCIPLES.................................................................................................. 161
1. From the researcher-biological sample to the participant-data model ..................................................................................................... 161
2. Transparency, data protection and participation........................... 163
a. Transparency ................................................................................... 164
b) Data protection................................................................................ 167
c) Participation.................................................................................... 169
CONCLUSIONS............................................................................................. 175
1. A secular, human rights-based bioethical approach to emerging ethical issues of human biological samples and associated data for research purposes................................................................. 175
2. An adequate governance structure for biobanks in response to current deficiencies in the regulatory framework......................... 176
2.1. Transparency ................................................................................ 177
2.2. Data protection............................................................................. 177
2.3. Participation................................................................................. 178
3. Biobank governance beyond legal compliance, with a focus on ethics ...................................................................................................... 178
4. Biobanks as societal actors beyond scientific infrastructures .... 179
5. Biobank practices grounded in a theoretical framework to ensure ethical decision-making ............................................................ 179
REFERENCES................................................................................................. 181

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