Abstract
The model of the commons appears theoretically relevant for thinking, not so much about health in general—health as an international public good has been the subject of numerous studies—but about the governance of the health tool that biobanks constitute, especially as we enter the era of genomic medicine. Nonetheless, the governance of biobanks, as transformed by genomic medicine, will have to meet some conditions in actual practice to constitute a true commons.
The authors thank F. Le Thimonier, A. de Guerra, A. Cambon-Thomsen, H. Esperou, C. Bourgain, F. Nowak, P. Boucher and Tom Billins for their comments and their counsel, and Jo Ann Cahn for the translation.
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Notes
- 1.
On this theme, see the special report in issue 5 of Cahiers Droit, sciences et technologies, 2015, entitled “Les frontières entre recherche et soin”, available at: https://cdst.revues.org/386.
- 2.
On big data, see the report of the Nuffield Council on Bioethics, “The collection, linking and use of data in biomedical research and health care: ethical issues”, February 2015, available at http://nuffieldbioethics.org/project/biological-health-data.
- 3.
- 4.
Articles L. 1243-3 and L. 1243-4 of the Public Health Code.
- 5.
For an overview of the activities of biobanks in France, see Washetin et al. (2017).
- 6.
See, for Great Britain, the 100,000 Genomes Project, 2014, https://www.england.nhs.uk/publication/100000-genomes-project-paving-the-way-to-personalised-medicine/ and https://www.genomicsengland.co.uk and, for the United States, Precision Medicine Initiative, 2015, https://obamawhitehouse.archives.gov/the-press-office/2015/01/30/fact-sheet-president-obama-s-precision-medicine-initiative, and https://allofus.nih.gov/.
- 7.
See these two sequencing projects: the French Exome Project (FREX) and the France GenRef Project.
- 8.
See Aviesan, 2016, available at https://www.aviesan.fr/aviesan/accueil/toute-l-actualite/plan-france-medecine-genomique-2025. This plan grants the wish expressed, among others, by the Academies of Medicine and of Technologies in their joint opinion in favor of increased integration of ultra-high-throughput sequencing into medical practice. See Académies de médecine and Académie des technologies, Rapport et recommandations sur la mise en œuvre en France des techniques de séquençage de nouvelle génération, 2016.
- 9.
See the government press release, dated July 17, 2017, available at http://www.gouvernement.fr/partage/9344-plan-france-medecine-genomique-2025-lancement-des-2-premieres-plateformes.
- 10.
In Great Britain, as part of the 100,000 Genomes Project, see https://www.genomicsengland.co.uk/taking-part/the-process/samples/.
- 11.
See the interview of Rory Collins, director of the UK Biobank, published by the Switzerland daily newspaper, Le temps, on April 28 2016, available at https://www.letemps.ch/sciences/2016/04/28/rory-collins-biobanques-acquerront-plus-plus-valeur.
- 12.
More information on this point can be found in the report devoted by The Science Magazine of the Max Planck Society to Big Data and, in particular, to the historical presentation by Heiborn (2017).
- 13.
For the French system, see Articles 1131-1 et seq. of the Public Health Code.
- 14.
About this qualification, see https://www.ukbiobank.ac.uk/wp-content/uploads/2011/05/EGF20082.pdf).
- 15.
France is likely to rely on the already existing platforms (at the Curie Institute, INCa, etc.) for the storage of samples.
- 16.
About the CAD, see the report France Genomique, 2015, p. 22 et seq., available at http://www.gouvernement.fr/sites/default/files/document/document/2016/06/22.06.2016_remise_du_rapport_dyves_levy_-_france_medecine_genomique_2025.pdf.
- 17.
For its composition, see https://www.genomicsengland.co.uk/about-genomics-england/the-board/access-review-committee/.
- 18.
Genomics England Publication Policy, 2016, available at https://public.huddle.com/a/pZZBloE/index.html.
- 19.
Genomics England Intellectual Property Policy, 2017, available at https://www.genomicsengland.co.uk/about-gecip/for-gecip-members/documents/.
- 20.
The objective is to avoid the difficulties raised in Europe by the patents protecting the BRCA genes. On this point, see D. Stoppa-Lyonnet et M. Cassier in F. Bellivier et Ch. Noiville, La bioéquité, Batailles autour du partage du vivant, Autrement, coll. Frontières, Paris, 2009, pp. 21 et seq., pp. 34 et seq. The question must be put into context with the more general one of drug prices and attempts to reach a “fair and controlled” price, in the words of the French Myopathy Association (see http://www.usinenouvelle.com/article/pour-l-afm-telethon-la-derniere-etape-est-de-mettre-les-traitements-a-disposition-des-patients.N471603), especially in today’s drug price explosion, especially for cancer therapy (see https://curie.fr/actualite/ouverture/observatoire-cancer-cout-des-traitements).
- 21.
- 22.
“The Department of Health has established Genomics England as a wholly owned, limited company to deliver the project. Genomics England is working with NHS England (NHSE), Public Health England (PHE), Health Education England (HEE), NHS Trusts, the Northern Ireland Department of Health (DoH NI) and a number of HSCNI organisations”. See The 100,000 Genomes Project Protocol, January 2017, p. 6, available at: https://www.genomicsengland.co.uk/wp-content/uploads/2017/03/Genomics-England-Protocol-v3.pdf.
- 23.
See, for example, the questions raised by the Science and Technology Committee, House of Commons, “Genomics and genome-editing: future lines of inquiry”, Sixteenth Report of Session 2016–17, May 1, 2017: “[t]he suitability of the ‘broad consent’ model being employed by the 100,000 Genomes Project, and whether the consent materials and patient recruitment techniques fully inform participants of the potential commercial uses of their data. This is tied to the debate around the nature of genetic data and whether it deserves a privileged status over other forms of personal health data”.
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Noiville, C., Bellivier, F. (2018). Biological Sample Collection in the Era of Genomic Medicine: A New Example of a Public Commons?. In: Bioy, X. (eds) Public Regulation of Tumor Banks. Springer, Cham. https://doi.org/10.1007/978-3-319-90563-1_18
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