The emergence of biobanks: between ethics, risks, and governance

Downey, Catarina; Curado, Henrique; Jacquinet, Marc

http://hdl.handle.net/10400.2/5931

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Authors

Downey, Catarina

Curado, Henrique

Jacquinet, Marc

Abstract(s)

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.