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Ethical Challenges for Biobanks: Two Sides of the Coin

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Biobanking of Human Biospecimens

Abstract

The many ethical challenges in biobanking include management of biobanks with quality issues and benefit sharing, consent issues related to autonomy of the donors, data storage, and privacy as well as the sources and use of samples and data. Thus, one side of the coin is the many potential health benefits, such as biomarkers for clinical purposes, which makes the development of biobanks containing human samples with linkable health data ethically justifiable. The other side of the coin is the ethical costs in the form of potential loss of autonomy depending on the consent practice, unknown or even unlawful use of tissues, and their future use in ways unacceptable to people. People, in general, are interested in genetic data and willing to donate samples and data to scientific research. It is important to cherish research integrity and listen to people’s opinions to retain trust. In addition to public discussion, education of both scientists and lay people, and advanced legislation are important for the ethically good long-term development for the biobanking field.

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Authors and Affiliations

  1. School of Pharmacy/Toxicology, Faculty of Health Sciences, University of Eastern Finland, Kuopio, Finland

    Kirsi Vähäkangas & Suchetana De

  2. Institute for Advanced Biosciences, Inserm 1209 CNRS 5309 University Grenoble-Alpes, Grenoble, France

    Pierre Hainaut

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  1. Kirsi Vähäkangas
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  2. Suchetana De
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  3. Pierre Hainaut
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Correspondence to Kirsi Vähäkangas .

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Editors and Affiliations

  1. Institute for Advanced Biosciences, La Tronche, France

    Pierre Hainaut

  2. International Prevention Research Institute, Editor-in-Chief, Biopreservation and Biobanking, Kensington, MD, USA

    Jim Vaught

  3. Diagnostic and Research Center for Molecular BioMedicine, Medical University of Graz, Graz, Steiermark, Austria

    Kurt Zatloukal

  4. Science and Research, Austrian Federal Ministry of Education and University of Milano-Bicocca, Milan, Italy, Vienna, Austria

    Markus Pasterk

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Vähäkangas, K., De, S., Hainaut, P. (2021). Ethical Challenges for Biobanks: Two Sides of the Coin. In: Hainaut, P., Vaught, J., Zatloukal, K., Pasterk, M. (eds) Biobanking of Human Biospecimens. Springer, Cham. https://doi.org/10.1007/978-3-030-55901-4_7

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