Abstract
Biobanks are increasingly being linked together into global networks in order to maximise their capacity to identify causes of and treatments for disease. While there is great optimism about the potential of these biobank networks to contribute to personalised and data-driven medicine, there are also ethical concerns about, among other things, risks to personal privacy and exploitation of vulnerable populations. Concepts drawn from theories of globalisation can assist with the characterisation of the ethical implications of biobank networking across borders, which can, in turn, inform more ethically sophisticated responses. Using the China Kadoorie Biobank as a case study, we show how distinguishing between the subnational, transnational, supranational and extranational spheres of operation and influence can help researchers, institutions and regulators to understand and manage the ethical issues raised by the globalisation of biobanking.
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Notes
For example, until 2016, 23andMe was only permitted to provide ancestry information to US customers, and other countries have varying restrictions on the information that can be provided to customers.
References
Appadurai, Arjun. 2010. How histories make geographies. Transcultural Studies 1(1): 4–13.
Chadwick, Ruth, and Alan O’Connor. 2016. Biobanking across borders. In Bodies across borders: the global circulation of body parts, medical tourists and professionals, eds. Bronwyn Parry, Beth Greenhough, Tim Brown and Isabel Dyck, 15–28. Abingdon: Routledge.
Chen, Haidan. 2013. Governing international biobank collaboration: a case study of China Kadoorie Biobank. Science, Technology and Society 18 (3): 321–338.
China Kadoorie Biobank. 2017a. Data access policy and principles. Data Access. http://www.ckbiobank.org/site/Data+Access/Data+Access+Policy. Accessed 15 Nov 2017.
China Kadoorie Biobank. 2017b. Data overview. Data access. http://www.ckbiobank.org/site/Data+Access/Data+Overview. Accessed 15 November 2017.
China Kadoorie Biobank. 2017c. CKB Data Access and Sample Preservation Policy. Resources. http://www.ckbiobank.org/site/binaries/content/assets/resources/pdf/ckb-data-access-policy_1april2014.pdf. Accessed 15 Nov 2017.
China Kadoorie Biobank. 2017d. Long term follow up. About the study. http://www.ckbiobank.org/site/About+the+Study/Long-TermFollow-up. Accessed 15 Nov 2017.
Dove, Edward S., Anne-Marie Tassé, and Bartha M. Knoppers. 2014. What are some of the ELSI challenges of international collaborations involving biobanks, global sample collection, and genomic data sharing and how should they be addressed? Biopreservation and Biobanking 12 (6): 363–364.
Habermas, Jürgen. 2001. The postnational constellation: political essays. Cambridge: MIT Press.
Harvey, David. 1990. The condition of postmodernity. Oxford: Basil Blackwell.
Hoeyer, Klaus. 2008. The ethics of research biobanking: a critical review of the literature. Biotechnology and Genetic Engineering Reviews 25 (1): 429–452.
Jacobson, D. 1996. Rights across borders: immigration and the decline of citizenship. Baltimore: The Johns Hopkins University Press.
Knoppers, Bartha Maria, Ruth Chadwick, Hiraku Takebe, Kåre Berg, Jose Maria Cantu, Abdallah S. Daar, Eve Marie Engels, Michael Kirby, Darryl Macer, and Thomas H. Murray. 2000. HUGO Ethics Committee statement on benefit sharing. Clinical Genetics 58 (5): 364–366.
Lunshof, Jeantine E., Ruth Chadwick, Daniel B. Vorhaus, and George M. Church. 2008. From genetic privacy to open consent. Nature Reviews Genetics 9 (5): 406–411.
O'Neill, Onora. 2002. Autonomy and trust in bioethics. Cambridge: Cambridge University Press.
Parodi, Barbara. 2015. Biobanks: a definition. In Ethics, Law and Governance of Biobanking, 15–19. Springer.
Scott, Christopher Thomas, Timothy Caulfield, Emily Borgelt, and Judy Illes. 2012. Personal medicine—the new banking crisis. Nature Biotechnology 30 (2): 141–147.
Sutrop, Margit. 2007. Trust. In The ethics and governance of human genetic databases: European perspectives, eds. Matti Häyry, Ruth Chadwick, Vilhjálmur Árnason, and Gardar Árnason, 190–198. Cambridge: Cambridge University Press.
Yoshizawa, Go, Calvin Wai-Loon Ho, Wei Zhu, Chingli Hu, Yoni Syukriani, Ilhak Lee, Hannah Kim, Daniel Fu Chang Tsai, Jusaku Minari, and Kazuto Kato. 2014. ELSI practices in genomic research in East Asia: implications for research collaboration and public participation. Genome Medicine 6 (5): 39.
Yoshizawa, Go, Teguh H. Sasongko, Chih-Hsing Ho, and Kazuto Kato. 2017. Social and communicative functions of informed consent forms in East Asia and beyond. Frontiers in Genetics 8(99): 1–12.
Acknowledgements
The authors gratefully acknowledge the other investigators on this project: Cameron Stewart, Robert Cumming, Simon Easteal, Emma Kowal, Catherine Waldby, Christine Critchley, Warwick Anderson and Paula Marlton.
Funding
Research related to this paper has been funded by the National Health and Medical Research Council of Australia (APP1083980).
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Dive, L., Mason, P., Light, E. et al. Globalisation and the Ethics of Transnational Biobank Networks. ABR 9, 301–310 (2017). https://doi.org/10.1007/s41649-017-0034-8
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DOI: https://doi.org/10.1007/s41649-017-0034-8