Biobanking, Scientific Productions and Human Rights
GLOBAL GENES, LOCAL CONCERNS: LEGAL, ETHICAL, AND SCIENTIFIC CHALLENGES IN INTERNATIONAL BIOBANKING, Timo Minssen, Janne Rothmar Herrmann and Jens Schovsbo, eds., Edward Elgar Publishing, pp. 73-91, 2019
15 Pages Posted: 7 Oct 2017 Last revised: 12 Aug 2019
Date Written: October 4, 2017
Biobanks exist in many forms, sizes, designs and structures. They provide important benefits to humanity. Yet, they also raise serious concerns and complications, especially in the areas of privacy, autonomy and personal data protection. Because these concerns often implicate the rights of individual donors, biobank users, relevant family members and other individual third parties, a logical topic to explore is whether a violation of the rights of these individuals could rise to the level of a human right violation.
Commissioned for a book on the legal, ethical and scientific challenges in international biobanking, this chapter provides a brief survey on three distinct sets of human rights issues, all related to biobanks. The first set concerns the human rights involved in the collection, processing, use or storage of the biological materials collected by biobanks. The second set pertains to the human rights issues implicated by the development of scientific productions utilizing the collected materials. The third set relates to the human rights obligations of three types of biobanks: public biobanks, private biobanks and biobanks formed out of public-private partnerships.
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