Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach, Eur J Hum Genet, vol.24, issue.7, pp.956-960, 2016. ,
Publications Office of the European Union ,
, The ethical implications of new health technologies and citizen participation, 2016.
, ITU releases 2018 global and regional ICT estimates URL, 2018.
The Growing Value of Digital Health, 2017. ,
Ethical issues in public health surveillance: a systematic qualitative review, BMC Public Health, vol.17, p.295, 2017. ,
Global capacity for emerging infectious disease detection, Proc Natl Acad Sci, vol.107, issue.50, pp.21701-21706, 2010. ,
Influenza A (H7N9) and the importance of digital epidemiology, N Engl J Med, vol.369, issue.5, pp.401-404, 2013. ,
Digital disease detection--harnessing the web for public health surveillance, N Engl J Med, vol.360, issue.21, pp.2153-2158, 2009. ,
Participatory disease surveillance: engaging communities directly in reporting, monitoring, and responding to health threats. JMIR Public Health Surveill, vol.3, p.62, 2017. ,
Digital epidemiology, PLoS Comput Biol, vol.8, issue.7, p.1002616, 2012. ,
Big data for infectious disease surveillance and modeling, J Infect Dis, vol.214, issue.suppl_4, pp.375-379, 2016. ,
The parable of Google Flu: traps in big data analysis, Science, vol.343, issue.6176, pp.1203-1205, 2014. ,
, EPIWORK: Ebola forecasting uses model developed by EU project, 2014.
Enhancing Participatory Influenza Monitoring Through Mobile Phone Sensors, The ACM International Joint Conference and International Symposium on Pervasive and Ubiquitous Computing and Wearable Computers, pp.8-12, 2018. ,
, , pp.833-841
Research ethics in the European Influenzanet Consortium: scoping review, vol.4, 2018. ,
Influenzanet: citizens among 10 countries collaborating to monitor influenza in Europe. JMIR Public Health Surveill, vol.3, p.66, 2017. ,
Web-based participatory surveillance of infectious diseases: the Influenzanet participatory surveillance experience, Clin Microbiol Infect, vol.20, issue.1, pp.17-21, 2014. ,
Infectious disease surveillance in the big data era: towards faster and locally relevant systems, J Infect Dis, vol.214, issue.suppl_4, pp.380-385, 2016. ,
Ten-year performance of Influenzanet: ILI time series, risks, vaccine effects, and care-seeking behaviour, Epidemics, vol.13, pp.28-36, 2015. ,
Internet-based monitoring of influenza-like illness in the general population: experience of five influenza seasons in The Netherlands, Vaccine, vol.27, issue.45, pp.6353-6357, 2009. ,
Effectiveness of 2012-2013 influenza vaccine against influenza-like illness in general population: estimation in a French web-based cohort, Hum Vaccin Immunother, vol.10, issue.3, pp.536-543, 2014. ,
Opinion about seasonal influenza vaccination among the general population 3 years after the A(H1N1)pdm2009 influenza pandemic, Vaccine, vol.33, issue.48, pp.6849-6854, 2015. ,
URL : https://hal.archives-ouvertes.fr/inserm-01245493
Evaluating the feasibility and participants' representativeness of an online nationwide surveillance system for influenza in France, PLoS One, vol.8, issue.9, p.73675, 2013. ,
URL : https://hal.archives-ouvertes.fr/hal-01618752
Ethical issues in health research with novel online sources, Am J Public Health, vol.102, issue.12, pp.2225-2230, 2012. ,
DOI : 10.2105/ajph.2012.300813
URL : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3519346/pdf
Ethics in public health research: privacy and public health at risk: public health confidentiality in the digital age, Am J Public Health, vol.98, issue.5, pp.793-801, 2008. ,
, World Health Organization. WHO Guidelines on Ethical Issues in Public Health Surveillance. Geneva: World Health Organization, 2017.
Ethics, big data and computing in epidemiology and public health, Ann Epidemiol, vol.27, issue.5, pp.297-301, 2017. ,
DOI : 10.1016/j.annepidem.2017.05.002
Ethical challenges of big data in public health, PLoS Comput Biol, vol.11, issue.2, p.1003904, 2009. ,
How data are transforming the landscape of biomedical ethics: the need for ELSI metadata on consent, The Ethics of Biomedical Big Data, vol.2016, pp.171-197 ,
Ethics in public health research: protecting human subjects: the role of community advisory boards, Am J Public Health, vol.94, issue.6, p.15249289, 2004. ,
Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework, EMBO Rep, vol.7, issue.7, pp.661-666, 2006. ,
DOI : 10.1038/sj.embor.7400740
URL : http://embor.embopress.org/content/7/7/661.full.pdf
Meta consent-a flexible solution to the problem of secondary use of health data, Bioethics, vol.30, issue.9, pp.721-732, 2016. ,
Public health practice is not research, Am J Public Health, vol.104, issue.4, pp.596-602, 2014. ,
Flu near you: crowdsourced symptom reporting spanning 2 influenza seasons, Am J Public Health, vol.105, issue.10, pp.2124-2130, 2015. ,
DOI : 10.2105/ajph.2015.302696
URL : http://ajph.aphapublications.org/doi/pdf/10.2105/AJPH.2015.302696
Meta consent -a workable procedure in the area of Big Data, Br Med J, vol.350, p.2146, 2015. ,
A presumed-consent model for regulating informed consent of genetic research involving DNA banking, Populations and Genetics: Legal Socio-Ethical Perspectives. Leiden: Martinus Nijhoff, pp.269-295, 2003. ,
Research on human biological materials: what consent is needed, and when, Biobanks and Tissue Research: The Public, the Patient and the Regulation, pp.95-110, 2011. ,
DOI : 10.1007/978-94-007-1673-5_7
Informed consent, big data, and the oxymoron of research that is not research, Am J Bioeth, vol.13, issue.4, pp.40-42, 2013. ,
DOI : 10.1080/15265161.2013.768864
Impossible, impractical, and non-identifiable? New criteria regarding consent for human tissue research in the Declaration of Helsinki, Biopreserv Biobank, vol.11, issue.3, pp.149-152, 2013. ,
Sample and data sharing barriers in biobanking: consent, committees, and compromises, Ann Diagn Pathol, vol.18, issue.2, pp.78-81, 2014. ,
DOI : 10.1016/j.anndiagpath.2013.12.002
In defense of broad consent, Camb Q Healthc Ethics, vol.21, issue.1, pp.40-50, 2012. ,
Should donors be allowed to give broad consent to future biobank research?, Lancet Oncol, vol.7, issue.3, pp.266-269, 2006. ,
DOI : 10.1016/s1470-2045(06)70618-0
Withdrawal of consent and destruction of samples, Ethical Isues in Governing Biobanks: Global Perspectives. London: Ashgate, pp.131-166, 2008. ,
Can broad consent be informed consent?, Public Health Ethics, vol.4, issue.3, pp.226-235, 2011. ,
DOI : 10.1093/phe/phr020
URL : http://europepmc.org/articles/pmc3218673?pdf=render
Consent and use of samples, Elger B, Biller-Andorno N, pp.57-88, 2008. ,
Consent to research involving human biological samples obtained during medical care, Ethical Issues in Governing Biobanks: Global Perspectives, pp.89-120, 2008. ,
Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?, Eur J Hum Genet, vol.21, issue.9, pp.897-902, 2013. ,
DOI : 10.1038/ejhg.2012.282
URL : https://www.nature.com/articles/ejhg2012282.pdf
Biobanks -when is re-consent necessary? Public Health Ethics, vol.4, pp.236-250, 2011. ,
DOI : 10.1093/phe/phr031
e-Consent: the design and implementation of consumer consent mechanisms in an electronic environment, J Am Med Inform Assoc, vol.11, issue.2, p.14662803, 2004. ,
,
Informed consent, N Engl J Med, vol.376, issue.9, pp.856-867, 2017. ,
Traditional and electronic informed consent for biobanking: a survey of U.S. biobanks, Biopreserv Biobank, vol.12, issue.6, pp.423-429, 2014. ,
DOI : 10.1089/bio.2014.0045
Where are human subjects in big data research? The emerging ethics divide. Big Data Soc, vol.3, pp.1-14, 2016. ,
DOI : 10.1177/2053951716650211
URL : https://doi.org/10.1177/2053951716650211
Big data for all: privacy and user control in the age of analytics, Nw J Tech Intell Prop, vol.11, issue.5, pp.240-273, 2013. ,
Face recognition technology, IEEE Intell Syst, vol.18, issue.3, pp.4-7, 2003. ,
A piece of yourself'': ethical issues in biometric identification, Ethics Inf Technol, vol.5, issue.3, pp.139-150, 2003. ,
Regulation (EU) 2016/679 of the European Parliament, 2016. ,
Personal Genome Project: lessons from participatory public research, Genome Med, vol.6, issue.2, p.10, 2014. ,
DOI : 10.1186/gm527
URL : https://genomemedicine.biomedcentral.com/track/pdf/10.1186/gm527
, Advice paper on special categories of data ("sensitive data, 2011.
Big data ethics. Big Data Soc, vol.1, pp.1-6, 2014. ,
Ethical issues in public health informatics: implications for system design when sharing geographic information, J Biomed Inform, vol.35, issue.3, pp.178-185, 2002. ,
Differentiating Smartphone Users by App Usage, pp.519-523, 2016. ,
DOI : 10.1145/2971648.2971707
Location-related privacy in geo-social networks, IEEE Internet Comput, vol.15, issue.3, pp.20-27, 2011. ,
Preparing for responsible sharing of clinical trial data, N Engl J Med, vol.369, issue.17, pp.1651-1658, 2013. ,
Robust De-anonymization of Large Sparse Datasets, Presented at: IEEE Symposium on Security and Privacy, pp.111-125, 2008. ,
The digital divide as a complex and dynamic phenomenon, Informa Soc, vol.19, issue.4, pp.315-326, 2003. ,
The digital divide has grown old: determinants of a digital divide among seniors, vol.18, pp.313-331, 2014. ,
Predictors of eHealth usage: insights on the digital divide from the Health Information National Trends Survey, J Med Internet Res, vol.16, issue.7, p.172, 2012. ,
The representativeness of a European multi-center network for influenza-like-illness participatory surveillance, BMC Public Health, vol.14, p.984, 2014. ,
URL : https://hal.archives-ouvertes.fr/hal-01311287
The obligation to participate in biomedical research, J Am Med Assoc, vol.302, issue.1, p.19567441, 2009. ,
, Jul. ICT FACTS AND FIGURES, 2017.
Participatory online surveillance as a supplementary tool to sentinel doctors for influenza-like illness surveillance in Italy, PLoS One, vol.12, issue.1, p.169801, 2017. ,
Participatory syndromic surveillance of influenza in Europe, J Infect Dis, vol.214, issue.suppl_4, pp.386-392, 2016. ,
The place of solidarity in public health ethics, Public Health Rev, vol.34, issue.1, pp.65-79, 2012. ,
The new European regulation on personal data protection: significant aspects for data processing for scientific research purposes, Epidemiol Biostat Public Health, vol.14, issue.2, pp.12286-12287, 2017. ,
Designing the health-related internet of things: ethical principles and guidelines, Information, vol.8, issue.3, p.77, 2017. ,