Legacy samples in Finnish biobanks : social and legal issues related to the transfer of old sample collections into biobanks

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Pysyväisosoite

http://hdl.handle.net/10138/308522

Lähdeviite

Salokannel , M , Tarkkala , H & Snell , K 2019 , ' Legacy samples in Finnish biobanks : social and legal issues related to the transfer of old sample collections into biobanks ' , Human Genetics , vol. 138 , no. 11-12 , pp. 1287-1299 . https://doi.org/10.1007/s00439-019-02070-0

Julkaisun nimi: Legacy samples in Finnish biobanks : social and legal issues related to the transfer of old sample collections into biobanks
Tekijä: Salokannel, Marjut; Tarkkala, Heta; Snell, Karoliina
Muu tekijä: University of Helsinki, University of Turku
University of Helsinki, Academic Disciplines of the Faculty of Social Sciences
University of Helsinki, Helsinki Collegium for Advanced Studies
Päiväys: 2019-10-16
Kieli: eng
Sivumäärä: 13
Kuuluu julkaisusarjaan: Human Genetics
ISSN: 1432-1203
URI: http://hdl.handle.net/10138/308522
Tiivistelmä: Biobank operations started officially in Finland in 2013 when the Biobank Act defining and regulating biobank operations came into force. Since then, ten biobanks have been established and they have started to collect new prospective samples with broad consent. The main corpus of biobank samples, however, consists of approximately 10 million “legacy samples”. These are old diagnostic or research samples that were transferred to biobanks in accordance with the Biobank Act. The focus of this article is on ambiguities concerning these legacy samples and their transfer in terms of legality, human rights, autonomy, and social sustainability. We analyse the Finnish biobank operations in the context of international regulation, such as the European Convention of Human Rights, the Oviedo Convention, European Charter of Fundamental Rights, the GDPR, and EU Clinical Trials Regulation, and show that the practice of using legacy samples is at times problematic in relation to this regulatory framework. We argue that the prevailing interpretations of these regulations as translated into the Finnish biobank practices undermine the autonomy of individuals by not giving individuals a right to consent or an actionable right to opt-out of the transfer of these legacy samples to the biobank. This is due to the fact that individuals are not given effective notification of such transfers. Thus, issues regarding the legal status of the biobank samples and the social sustainability of biobank operations remain a challenge for biobanks in Finland despite governmental efforts to create pioneering, comprehensive, and enabling legislation.
Avainsanat: 1184 Genetics, developmental biology, physiology
privacy
health
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