Closure of Population Biobanks and Direct-to-Consumer Genetic Testing Companies

Human Genetics, (2011) 130:425–432

8 Pages Posted: 1 Aug 2015

See all articles by Ma'n H. Zawati

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Pascal Borry

KU Leuven; VU University Medical Center

Heidi Howard

KU Leuven; University of Basel

Date Written: June 26, 2011

Abstract

Genetic research gained new momentum with the completion of the Human Genome Project in 2003. Formerly centered on the investigation of single-gene disorders, genetic research is increasingly targeting common complex diseases and in doing so is studying the whole genome, the environment and its impact on genomic variation. Consequently, biobanking initiatives have emerged around the world as a tool to sustain such progress. Whether they are small scale or longitudinal, public or private, commercial or non-commercial, biobanks should consider the possibility of closure. Interestingly, while raising important ethical issues, this topic has hardly been explored in the literature. Indeed, ethical issues associated with sale, insolvency, end of funding, or transfer of materials to other entities (which are all issues either related to or possible consequences of closure) are seldom the subject of discussion. In an attempt to Wll this gap, this paper will discuss — using population and direct-to-consumer (DTC) genetic testing companies’ biobanks as case studies — (1) international and national normative documents addressing the issue of closure and (2) the internal policies of population biobanks and DTC genetic testing companies. The analysis will inform the debate on biobank closure and elucidate the underlying ethical issues, which include, but are not limited to informed consent, storage and privacy.

Keywords: Population Biobanks, Direct-to-consumer genetic testing companies, Closure

Suggested Citation

Zawati, Ma'n H. and Borry, Pascal and Howard, Heidi, Closure of Population Biobanks and Direct-to-Consumer Genetic Testing Companies (June 26, 2011). Human Genetics, (2011) 130:425–432, Available at SSRN: https://ssrn.com/abstract=2635022

Ma'n H. Zawati (Contact Author)

McGill University - Centre of Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Pascal Borry

KU Leuven ( email )

Oude Markt 13
Leuven, Vlaams-Brabant 3000
Belgium

VU University Medical Center ( email )

De Boelelaan 1117
Amsterdam, North Holland 1081 HV
Netherlands

Heidi Howard

KU Leuven ( email )

Oude Markt 13
Leuven, Vlaams-Brabant 3000
Belgium

University of Basel ( email )

Petersplatz 1
Basel, CH-4003
Switzerland

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