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Ethical Challenges of Big Data in Public Health

E Vayena
2015 European Journal of Public Health  
vary according to the type of big data activity in question.  ...  It is clear that the context of DDD differs in significant ways from other types of big data activity concerned with health.  ... 
doi:10.1093/eurpub/ckv169.024 fatcat:sq7jab3ycbelvhqmrinm3yzidq

Ethical Challenges of Big Data in Public Health

Effy Vayena, Marcel Salathé, Lawrence C. Madoff, John S. Brownstein, Philip E. Bourne
2015 PLoS Computational Biology  
vary according to the type of big data activity in question.  ...  It is clear that the context of DDD differs in significant ways from other types of big data activity concerned with health.  ... 
doi:10.1371/journal.pcbi.1003904 pmid:25664461 pmcid:PMC4321985 fatcat:pzhsl7icyng5nidzjixgytvxp4

Confronting the Ethical Challenges of Big Data in Public Health

Philip E. Bourne
2015 PLoS Computational Biology  
As illustrated in this article, whether for purposes of research and/or public health, social media data require that further attention be paid.  ...  accelerate much needed cures and improvements to health care in general.  ... 
doi:10.1371/journal.pcbi.1004073 pmid:25664660 pmcid:PMC4321831 fatcat:m5lsd4aghfcu3pdh6zeiteewza

Considerations for ethics review of big data health research: A scoping review

Marcello Ienca, Agata Ferretti, Samia Hurst, Milo Puhan, Christian Lovis, Effy Vayena, Godfrey Biemba
2018 PLoS ONE  
The methodological novelty and computational complexity of big data health research raises novel challenges for ethics review.  ...  In this study, we conducted a scoping review of the literature using five databases to identify and map the major challenges of health-related big data for Ethics Review Committees (ERCs) or analogous  ...  Acknowledgments This manuscript was supported by the Swiss National Science Foundation under award 407540_167223 (NRP 75 Big Data).  ... 
doi:10.1371/journal.pone.0204937 pmid:30308031 pmcid:PMC6181558 fatcat:mcnuilpzajghvlth6flfavmzyq

The academic viewpoint on Big data and patient data ownership (as seen in the scientific literature)

I Mircheva, M Mirchev
2020 European Journal of Public Health  
The majority (63%) are in the area of scientific research - clinical studies, access and use of patient data for medical research, secondary use of medical data, ethical challenges to Big data in healthcare  ...  Overcoming the challenge of ownership may help in improving healthcare services, medical and public health research and the health of the population as a whole.  ...  The majority (63%) are in the area of scientific research -clinical studies, access and use of patient data for medical research, secondary use of medical data, ethical challenges to Big data in healthcare  ... 
doi:10.1093/eurpub/ckaa166.171 fatcat:utpi4alscfegjarollmi76j5rm

Disease surveillance data sharing for public health: the next ethical frontiers

Patty Kostkova
2018 Life Sciences, Society and Policy  
In this paper we identify three ethical challenges: sharing data across various early warning tools to support risk assessment.  ...  Secondly, define the challenges to be addressed by the legal frameworks for public health data sharing to unlock the potential of population-level datasets for research with no impact on citizens privacy  ...  New ethical frontiers Data ownerships and sharing for public health surveillance and relevant governance and lack of regulation of data have crystallized into three major ethical challenges.  ... 
doi:10.1186/s40504-018-0078-x pmid:29971516 pmcid:PMC6029986 fatcat:vzi5xmcxtjaoblqofyez3pthxm

The Opportunities, Challenges and Ethical Thinking of Medical Big Data

Yan-Ping LI, Lu WANG, Fen-Fen XIE, Yuan CHAI, Shi-Ying WANG
2020 DEStech Transactions on Social Science Education and Human Science  
As a socialist country China insists on achieving basic medical health service public welfare, medical big data can serve the national health career only by carrying out the people-oriented concept, adhering  ...  However, the ethical issues such as the leakage of health privacy cannot be ignored.  ...  improve the awareness of medical big data ethics and the awareness of information security of the public.  ... 
doi:10.12783/dtssehs/icesd2020/34481 fatcat:u7gz3iiaszcfxmgyetcefn42rq

The Academic Viewpoint on Patient Data Ownership in the Context of Big Data – a Scoping Review (Preprint)

Martin Mirchev, Iskra Mircheva, Albena Kerekovska
2020 Journal of Medical Internet Research  
issues in the reality of big data.  ...  ownership issues in the context of big data.  ...  Two other publications are in the area of using big data in health care: development of public policies to advance the use of big data in health care [89] and the challenges and opportunities of big  ... 
doi:10.2196/22214 pmid:32808934 fatcat:ahlh5tgu7zdbrnboqlom4wsukq

Ethics in Health Informatics

Kenneth W Goodman
2020 IMIA Yearbook of Medical Informatics  
of Big Data analytics, whether and how to use this technology, and the role of ethics and standards in health policy.  ...  The challenges include the development and the appropriate uses and users of machine learning software, the balancing of privacy rights against the needs of public health and clinical practice in a time  ...  Worse, the erosive use of Big Data for profit in business and industry has polluted public perceptions of all uses of Big Data.  ... 
doi:10.1055/s-0040-1701966 pmid:32303095 pmcid:PMC7442522 fatcat:tnzqxna3wndujb3tbtzingqqjq

Big Data, Biomedical Research, and Ethics Review: New Challenges for IRBs

Agata Ferretti, Marcello Ienca, Samia Hurst, Effy Vayena
2020 Ethics & Human Research  
The novelty of techniques and methods brought by big data research brings new challenges to institutional review boards (IRBs).  ...  The increased use of big data in the medical field has shifted the way in which biomedical research is designed and carried out.  ...  for seeking retrospective consent in the context of public health research conducted in the public interest (such as epidemic prevention).  ... 
doi:10.1002/eahr.500065 pmid:32937036 fatcat:i7bq64sxynd7nn7h3r3lftvtv4

How do we reimagine health in a digital age?

Flavia Bustreo, Marcel Tanner
2020 Bulletin of the World Health Organization  
key ethical challenges of digital health.  ...  theme issue on the new ethical challenges of digital technologies, machine learning and artificial intelligence in public health of the Bulletin of the World Health Organization to tackling many of the  ...  How do we reimagine health in a digital age? Flavia Bustreo a & Marcel Tanner a  ... 
doi:10.2471/blt.19.235358 pmid:32284642 pmcid:PMC7133467 fatcat:h3mvydyhxjb2fk7cuzjzb6un6m

Ethics review of big data research: What should stay and what should be reformed?

Agata Ferretti, Marcello Ienca, Mark Sheehan, Alessandro Blasimme, Edward S Dove, Bobbie Farsides, Phoebe Friesen, Jeff Kahn, Walter Karlen, Peter Kleist, S Matthew Liao, Camille Nebeker (+4 others)
2021 BMC Medical Ethics  
Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science.  ...  Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness.  ...  All authors participated in the "Big Data Challenges for Ethics Review Committees" workshop, held online the 23-24 April 2020 and organized by the Health Ethics and Policy Lab, ETH Zurich.  ... 
doi:10.1186/s12910-021-00616-4 pmid:33931049 fatcat:43qj6qt7xfctrl23kc4m6zlc2q

La bioética en el época del 'big data': la salud y más allá

Sarah Chan
2017 Revista de Bioética y Derecho  
En este artículo, exploraré aspectos éticos de la llegada del 'big data' al ámbito de la salud.  ...  La ciencia de 'big data' (o datos masivos) lleva mucho potencial para la investigación biomédica, y promete una transformación en la salud y la asistencia médica.  ...  Big health data thus promises a revolution in health at all levels from individual care to public health 1 .  ... 
doi:10.1344/rbd2017.41.19879 doaj:cda71731106443408d8f16ec15c129c3 fatcat:gem5ogei6jfnhid6a6u4urnuhq

Big Data and Public-Private Partnerships in Healthcare and Research

Angela Ballantyne, Cameron Stewart
2019 Asian Bioethics Review  
Public-private partnerships (PPPs) are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain-producing health data, analysing  ...  We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector health data, and questions of ownership, both of the data and  ...  , and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.  ... 
doi:10.1007/s41649-019-00100-7 pmid:33717319 pmcid:PMC7747238 fatcat:ppjepbbw2bgwthgrhjgj6otv6a

2.1 Legal, Ethical, and Policy Issues of 'Big Data 2.0' Collaborative Ventures and Roles for Information Professionals in Research Libraries

Sheila Corrall
2016 Zenodo  
Legal, ethical, and policy issues implicated by such Big Data enterprises will present equivalent, if not greater, challenges on issues like data protection and use.  ...  The emerging Age of Big Data 2.0 promises myriad imagined and yet-to-be-imagined opportunities for the advancement of human knowledge.  ...  Information Culture & Data Stewardship Ethical issues arising from Big Data Ø Peaceful/Public Good/Public Interest uses vs. Military/ Na7onal Security uses vs.  ... 
doi:10.5281/zenodo.3606378 fatcat:3vn2zgkasze73nxpqc44linj5q
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