[HTML][HTML] Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach

M Mostert, AL Bredenoord, MCIH Biesaart… - European Journal of …, 2016 - nature.com
Medical research is increasingly becoming data-intensive; sensitive data are being re-used,
linked and analysed on an unprecedented scale. The current EU data protection law reform …

The EU general data protection regulation: implications for international scientific research in the digital era

ES Dove - Journal of Law, Medicine & Ethics, 2018 - cambridge.org
On May 25, 2018, the General Data Protection Regulation (GDPR) 1 took full legal effect
across the European Union (EU) and, subsequently, the European Economic Area (EEA), 2 …

[PDF][PDF] Should consent for data processing be privileged in health research? A comparative legal analysis

ES Dove, J Chen - International Data Privacy Law, 2020 - academic.oup.com
Several recently drafted data protection laws appear to afford a privileged position to
scientific research, including health research. Provisions that might otherwise apply to data …

Big genetic data and its big data protection challenges

P Quinn, L Quinn - Computer law & security review, 2018 - Elsevier
The use of various forms of big data have revolutionised scientific research. This includes
research in the field of genetics in areas ranging from medical research to anthropology …

[HTML][HTML] Potential harms, anonymization, and the right to withdraw consent to biobank research

S Eriksson, G Helgesson - European Journal of Human Genetics, 2005 - nature.com
This paper discusses the potential harms involved in biobank research and how ethical
review, informed consent, withdrawals, and anonymization of samples should be handled in …

Assessing the privacy risks of data sharing in genomics

C Heeney, N Hawkins, J de Vries, P Boddington… - Public health …, 2010 - karger.com
The protection of identity of participants in medical research has traditionally been
guaranteed by the maintenance of the confidentiality of health information through …

[HTML][HTML] Sharing health-related data: a privacy test?

SOM Dyke, ES Dove, BM Knoppers - NPJ genomic medicine, 2016 - nature.com
Greater sharing of potentially sensitive data raises important ethical, legal and social issues
(ELSI), which risk hindering and even preventing useful data sharing if not properly …

[HTML][HTML] Ethics and big data in health

BM Knoppers, AM Thorogood - Current Opinion in Systems Biology, 2017 - Elsevier
Abstract With the EU General Data Protection Regulation entering into force in 2018, the
stage is set for international debate on Big Data sharing in health. Considering the fact that …

Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation

M Shabani, P Borry - European Journal of Human Genetics, 2018 - nature.com
Genetic data contain sensitive health and non-health-related information about the
individuals and their family members. Therefore, adopting adequate privacy safeguards is …

Big data and health research—the governance challenges in a mixed data economy

S Holm, T Ploug - Journal of bioethical inquiry, 2017 - Springer
Denmark is a society that has already moved towards Big Data and a Learning Health Care
System. Data from routine healthcare has been registered centrally for years, there is a …