The Emergence of Biobanks: Between Ethics, Risks, and Governance

The Emergence of Biobanks: Between Ethics, Risks, and Governance

Catarina Downey, Henrique Curado, Marc Jacquinet
Copyright: © 2016 |Pages: 10
DOI: 10.4018/978-1-4666-9978-6.ch014
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Public health research and planning, and the development of more effective therapies for individuals may take on radical new dimensions with the newly information made available through biobanks. Furthermore, the information that can be disclosed about an individual can also be used, intentionally or unintentionally, for economic and social discrimination, especially in insurance, employment, attribution of bank credits and other access issues (Rose & Novas, 2005).

Alongside the scientific revolution, the European understanding and acceptance of biotechnology evolved. Data protection is an important aspect of medical data and a major condition for the safeguarding of fundamental rights and freedoms of individuals, especially privacy. However, the development of these important safeguards still requires the consideration of many key questions about the meaning of privacy in relation to genetic information and about effective protection of legitimate rights (Taylor & Townend, 2010. Several studies have been devoted to the ethical, regulatory and social challenges associated with biobanks, particularly in relation to consent and privacy.

Key Terms in this Chapter

Biobanks: Collections of biological samples (that can be used to acquire DNA) and different types of information (medical records and medical history, life style information and other personal data).

Ethics: Well-founded standards that prescribe what humans ought to do, usually in terms of rights and obligations. Ethics are cultural, time and context sensitive.

Risk: Risk is a threat, a source of uncertainty, a combination of danger and opportunity. It is perceived in a specific cultural and time context.

Privacy: Right to control who, when, how and to what extent personal information is communicated to others.

Society: Group of people that share common values, embed by culture, tradition and beliefs, involved in persistent interpersonal relationships.

Governance: The process by which authority is conferred on rulers, by which they make the rules, and by which those rules are enforced and modified (World Bank).

Network: Series of institutions and/or research centers interconnected by communication paths that share common interests. AU39: Hidden Text AU40: Hidden Text

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