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Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance

A comprehensive typology of risks for an adaptive risk governance
Authors: Akyüz, Kaya; Chassang, Gauthier; Goisauf, Melanie; Kozera, Łukasz; Mezinska, Signe; Tzortzatou, Olga; Mayrhofer, Michaela Th.;

Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance

Abstract

AbstractBiobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspectives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks could potentially face. Methodologically set as a typology, the conceptual approach used in this paper is based on the interdisciplinary analysis of scientific literature, the relevant ethical and legal instruments and practices in biobanking to identify how risks are assessed, considered and mitigated. Through an interdisciplinary mapping exercise, we have produced a typology of potential risks in biobanking, taking into consideration the perspectives of different stakeholders, such as institutional actors and publics, including participants and representative organizations. With this approach, we have identified the following risk types: economic, infrastructural, institutional, research community risks and participant’s risks. The paper concludes by highlighting the necessity of an adaptive risk governance as an integral part of good governance in biobanking. In this regard, it contributes to sustainability in biobanking by assisting in the design of relevant risk management practices, where they are not already in place or require an update. The typology is intended to be useful from the early stages of establishing such a complex and multileveled biomedical infrastructure as well as to provide a catalogue of risks for improving the risk management practices already in place.

Country
Austria
Keywords

Biobanking, PERCEPTIONS, SDG 16 - Peace, INFORMATION, CONSENT, risk governance, Review, MANAGING INCIDENTAL FINDINGS, stakeholders, RECOMMENDATIONS, Stakeholders, SDG 3 - Good Health and Well-being, SDG 16 – Frieden, PARTICIPANTS, Humans, CLINICAL EXOME, Risk assessment, Biological Specimen Banks, data privacy, Risk Management, 509017 Social studies of science, Publications, Gerechtigkeit und starke Institutionen, risk assessment, sustainability, Biobank management, FRAMEWORK, Justice and Strong Institutions, 106004 Bioethik, Typology, Sustainability, ELSI, Risk governance, SDG 3 – Gesundheit und Wohlergehen, Biobanking Biobank management Risk governance Risk assessment ELSI Data privacy Typology Sustainability Stakeholders, 301907 Biobanking, WHOLE-GENOME, [SHS] Humanities and Social Sciences, HEALTH, typology, 509017 Wissenschaftsforschung, Data privacy, 106004 Bioethics

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    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    10
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Top 10%
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Top 10%
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citations
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
10
Top 10%
Average
Top 10%
Green
gold
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