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Pathogens collections, biobanks and related-data in a One Health legal and ethical perspective

Published online by Cambridge University Press:  29 November 2017

CLAIRE LAJAUNIE*
Affiliation:
Inserm, DICE-Ceric, UMR 7318, International, Comparative and European Law, CNRS and Aix-Marseille University, Aix-en-Provence, France
CALVIN WAI-LOON HO
Affiliation:
Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
*
*Corresponding author: DICE-Ceric, UMR 7318, International, Comparative and European Law, Faculté de Droit et de Science Politique - Aix-Marseille Université, Espace Cassin, 3 avenue Robert Schuman - 13628 Aix-en-Provence Cedex 1. E-mail: [email protected]

Summary

Research on emerging infectious diseases calls for a work on collections of pathogens (including hosts or vectors from which the pathogens were isolated), related to human and animal health, to wildlife or on the environmental material. In this respect, the adoption of a One Health perspective is determined by the need for a common approach to consider the collection, storage and use of pathogens coming from human or non-human sources, and particularly when the same pathogen is taken from different environments. In response to this development, our purpose is to delineate a flexible regulation framework concerning collections of pathogens from various origins or hosts and their associated data in order to facilitate scientific work and research partnerships. The legal and ethical cutting-edge research on Biomedical Big Data is particularly stimulating when it comes to address challenges related to collections or biobanks of pathogens such as prior informed consent and accessibility, Material Transfer Agreement or benefit sharing.

Type
Special Issue Article
Copyright
Copyright © Cambridge University Press 2017 

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References

REFERENCES

AVMA, American Veterinary Medical Association (2008). One Health — a New Professional Imperative, 71p. https://www.avma.org/KB/Resources/Reports/Documents/onehealth_final.pdf.Google Scholar
Bousfield, B. and Brown, R. (2011). One World, One Health. Veterinary Bulletin – Agriculture, Fisheries and Conservation Department Newsletter, Vol. No. 1 (7).Google Scholar
Capua, I. (2016). Data sharing: a code of conduct for data on epidemics. Nature 534(7607), 326.CrossRefGoogle ScholarPubMed
De Vries, J., Williams, T. N., Bojang, K., Kwiatkowski, D. P., Fitzpatrick, R. and Parker, M. (2014). Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa. BMC Medical Ethics 15, 62.CrossRefGoogle ScholarPubMed
DiEuliis, D. (2015). The role of scientific collections in scientific preparedness. Emerging Infectious Diseases 21(8), e150423.CrossRefGoogle Scholar
DiEuliis, D., Johnson, K. R., Morse, S. S. and Schindel, D. E. (2016). Opinion: specimen collections should have a much bigger role in infectious disease research and response. Proceedings of the National Academy of Sciences of the United States of America 113(1), 47.CrossRefGoogle Scholar
European Commission (2004). Expert Group, 25 Recommendations on the Ethical, Legal and Social Implications of Genetic Testing. Brussels, Belgium: European Communities, 25p.Google Scholar
Food and Agriculture Organization, World Organisation for Animal Health (OIE) and World Health Organization (2010). Sharing responsibilities and coordinating global activities to address health risks at the animal-human-ecosystems interfaces. A Tripartite Concept Note, 8p.Google Scholar
Floridi, L. (2012). Big data and their epistemological challenge. Philosophy & Technology 25(4), 435437.CrossRefGoogle Scholar
Gebreyes, W. A., Dupouy-Camet, J., Newport, M. J., Oliveira, C. J. B., Schlesinger, L. S., Saif, Y. M., Saville, W., Wittum, T., Hoet, A., Quessy, S., Kazwala, R., Tekola, B., Shryock, T., Biesi, M., Patchanee, P., Boonmar, S. and King, L. (2014). The global one health paradigm: challenges and opportunities for tackling infectious diseases at the human, animal, and environment interface in low-resource settings. PLoS Neglected Tropical Diseases 8(11), e3257.CrossRefGoogle ScholarPubMed
Gortazar, C., Reperant, L. A., Kuiken, T., de la Fuente, J., Boadella, M., Martínez-Lopez, B., Ruiz-Fons, F., Estrada-Peña, A., Drosten, C., Medley, G., Ostfeld, R., Peterson, T., VerCauteren, K. C., Menge, C., Artois, M., Schultsz, C., Delahay, R., Serra-Cobo, J., Poulin, R., Keck, F., Aguirre, A., Henttonen, H., Dobson, A. P., Kutz, S., Lubroth, J. and Mysterud, A. (2014). Crossing the interspecies barrier: opening the door to zoonotic pathogens. PLoS Pathogens, 10(6), e1004129. http://doi.org/10.1371/journal.ppat.1004129.CrossRefGoogle ScholarPubMed
Groeneveld, L. F., Gregusson, S., Guldbrandtsen, B., Hiemstra, S. J., Hveem, K., Kantanen, J., Lohi, H., Stroemstedt, L. and Berg, P. (2016). Domesticated animal biobanking: land of opportunity. PLoS Biology 14(7), e1002523.CrossRefGoogle ScholarPubMed
Hallinan, D. and De Hert, P. (2016). Many have it wrong – samples do contain personal data: the data protection regulation as a superior framework to protect donor interests in biobanking and genomic research. In Mittelstadt, B. and Floridi, L. (eds) The Ethics of Biomedical Big Data. Law, Governance and Technology Series, vol. 29. Switzerland: Springer.Google Scholar
Jones, K. E., Patel, N. G., Levy, M. A., Storeygard, A., Balk, D., Gittleman, J. L. and Daszak, P. (2008). Global trends in emerging infectious diseases. Nature 451, 990993.CrossRefGoogle ScholarPubMed
Kaye, J. (2012). The tension between data sharing and the protection of privacy in genomics research. Annual Review of Genomics and Human Genetics 13, 415431.CrossRefGoogle ScholarPubMed
Lajaunie, C. and Mazzega, P. (2016). One health and biodiversity conventions. The emergence of health issues in biodiversity conventions. IUCN Academy of Environmental Law eJournal 7, 105121.Google Scholar
Lajaunie, C. and Morand, S. (2015). Barcoding, biobanking, ebanking: from ecological to ethical and legal aspects. Insights from the PathodivSEA project. In Morand, S., Dujardin, J-P, Lefait-Robin, R., and Apiwathnasorn, C. (eds) Socio-Ecological Dimensions of Infectious Diseases in Southeast Asia. Singapore: Springer, pp. 217228.CrossRefGoogle Scholar
Lajaunie, C., Morand, S. and Huan, T. B. (2014). Barcoding, biobanking, ebanking for ‘One health’ projects in South-East Asia: considering ethics and international law. Eubios Journal of Asian and International Bioethics 24(4), 129131.Google Scholar
Lajaunie, C., Morand, S. and Binot, A. (2015). The link between health and biodiversity in Southeast Asia through the example of infectious diseases. Environmental Justice 8, 2631.CrossRefGoogle Scholar
Mittelstadt, B. D. and Floridi, L. (eds) (2016). The Ethics of Biomedical Big Data. Law, Governance and Technology Series. Switzerland: Springer, vol. 29, 348p.CrossRefGoogle Scholar
Morand, S., Beaudeau, F. and Cabaret, J. (eds) (2012). New Frontiers of Molecular Epidemiology of Infectious Diseases. Netherlands: Springer, 332p.CrossRefGoogle Scholar
Morand, S., Dujardin, J-P, Lefait-Robin, R. and Apiwathnasorn, C. (eds) (2015). Socio-Ecological Dimensions of Infectious Diseases in Southeast Asia. Springer, 335p.CrossRefGoogle Scholar
Morgera, E. (2017). Fair and equitable benefit-sharing: history, normative content and status in international Law. ‘Benefit-sharing’. In Orlando, E. and Krämer, L. (eds). Encyclopedia of Environmental Law: Principles of Environmental Law. (EE, 2017). http://dx.doi.org/10.2139/ssrn.2956927Google Scholar
Morgera, E., Tsioumani, E. and Buck, M. (2014). Unraveling the Nagoya Protocol: A Commentary on the Nagoya Protocol on Access and Benefit-Sharing to the Convention on Biological Diversity. Legal Studies on Access and Benefit-Sharing, Martinus Nijhoff. doi: 10.1163/9789004217188CrossRefGoogle Scholar
Parodi, B. (2015). Biobanks: a definition, in ethics, Law and governance of biobanking, national, European and international approaches. In Mascalzoni D (ed.). The International Library of Ethics, Law and Technology. Netherlands: Springer, pp. 1519.Google Scholar
Schindel, D., Miller, S., Trizna, M., Graham, E. and Crane, A. (2016). The global registry of biodiversity repositories: a call for community curation. Biodiversity Data Journal 4, e10293.CrossRefGoogle Scholar
Scientific Collections International (2015). Scientific Collections and Emerging Infectious Diseases: Report of an Interdisciplinary Workshop. SciColl Report 1.doi: 10.5479/si.SciColl.CrossRefGoogle Scholar
Walther, B. A., Boëte, C., Binot, A., By, Y., Cappelle, J., Carrique-Mas, J. J., Chou, M., Furey, N., Kim, S., Lajaunie, C., Lek, S., Méral, P., Neang, M., Tan, B. H., Walton, C. and Morand, S. (2016). Biodiversity and health: lessons and recommendations from an interdisciplinary conference to advise Southeast Asian research, society and policy. Infection Genetics and Evolution 40, 2946.CrossRefGoogle ScholarPubMed
Shaw, D. M., Elger, B. S., and Colledge, F. (2014). What is a biobank? Differing definitions among biobank stakeholders. Clinical Genetics, 85, 223227.CrossRefGoogle ScholarPubMed
Webster, J. P., Gower, C. M., Knowles, S. C. L., Molyneux, D. H. and Fenton, A. (2016). One health – an ecological and evolutionary framework for tackling neglected zoonotic diseases. Evolutionary Applications 9(2), 313333.CrossRefGoogle ScholarPubMed
World Health Organization (2011). Pandemic Influenza Preparedness Framework for Sharing of Influenza Viruses and Access to Vaccines and other Benefits. Geneva: World Health Organization.Google Scholar
World Health Organization (2016a). Review of the Pandemic Influenza Preparedness Framework, Report by the Director-General, EB140/16, 29 December 2016.Google Scholar
World Health Organization (2016b). Implementation of the International Health Regulations (2005), Public health implications of the implementation of the Nagoya Protocol, Report of the Secretariat, Advance Copy, December 2016. http://www.who.int/influenza/pip/2016-review/NagoyaStudyAdvanceCopy_full.pdf?ua=1Google Scholar
Woolhouse, M., Scott, F., Hudson, Z., Howey, R. and Chase-Topping, M. (2012). Human viruses: discovery and emergence. Philosophical Transactions of the Royal Society of London. Series B, Biological Sciences, 367, 28642871,CrossRefGoogle ScholarPubMed
Woolley, P. J. (2016). How data are transforming the landscape of biomedical ethics: the need for ELSI metadata on consent. In The Ethics of Biomedical Big Data. Mittelstadt, B. D. and Floridi, L. (eds) Law, Governance and Technology Series. Switzerland: Springer, pp. 171197.CrossRefGoogle Scholar