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

Commentary

(2015) Stephen J. Mooney et al.   EPIDEMIOLOGY

Will the trilogue on the EU Data Protection Regulation recognise the importance of health research?

(2015) R. Coppen et al.   EUROPEAN JOURNAL OF PUBLIC HEALTH

Apple's ResearchKit frees medical research

(2015)   NATURE BIOTECHNOLOGY

Risks of the new EU Data protection regulation: an ESMO position paper endorsed by the European oncology community

(2014) P. G. Casali et al.   ANNALS OF ONCOLOGY

The European Parliament proposal for the new EU General Data Protection Regulation may severely restrict European epidemiological research

(2014) Olof Nyrén et al.   EUROPEAN JOURNAL OF EPIDEMIOLOGY

Dynamic consent: a patient interface for twenty-first century research networks

(2014) Jane Kaye et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

International Charter of principles for sharing bio-specimens and data

(2014) Deborah Mascalzoni et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

BBMRI-ERIC as a resource for pharmaceutical and life science industries: the development of biobank-based Expert Centres

(2014) Gert-Jan B van Ommen et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

DataSHIELD: taking the analysis to the data, not the data to the analysis

(2014) Amadou Gaye et al.   INTERNATIONAL JOURNAL OF EPIDEMIOLOGY

Data protection and consent to biomedical research: a step forward?

(2014) Edward S Dove et al.   LANCET

New data protection rules could harm research, science groups say

(2014) Elie Dolgin   NATURE MEDICINE

EU data protection regulation—harming cancer research

(2014) David J. Kerr   Nature Reviews Clinical Oncology

DataSHIELD: An Ethically Robust Solution to Multiple-Site Individual-Level Data Analysis

(2014) Isabelle Budin-Ljøsne et al.   Public Health Genomics

Protecting Personal Data in Epidemiological Research: DataSHIELD and UK Law

(2014) Susan E. Wallace et al.   Public Health Genomics

LIFE SCIENCE TECHNOLOGIES: Big biological impacts from big data

(2014) M. May   SCIENCE

UK Biobank Data: Come and Get It

(2014) N. E. Allen et al.   Science Translational Medicine

International ethics harmonization and the global alliance for genomics and health

(2014) Bartha M Knoppers   Genome Medicine

Big data in biomedicine

(2013) Fabricio F. Costa   DRUG DISCOVERY TODAY

Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

(2013) Kristin Solum Steinsbekk et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Health research and systems’ governance are at risk: should the right to data protection override health?

(2013) C T Di Iorio et al.   JOURNAL OF MEDICAL ETHICS

The big challenges of big data

(2013) Vivien Marx   NATURE

"Big Data" Versus "Big Brother": On the Appropriate Use of Large-scale Data Collections in Pediatrics

(2013) J. Currie   PEDIATRICS

Identifying Personal Genomes by Surname Inference

(2013) M. Gymrek et al.   SCIENCE

The Complexities of Genomic Identifiability

(2013) L. L. Rodriguez et al.   SCIENCE

A SOLIDARITY-BASED APPROACH TO THE GOVERNANCE OF RESEARCH BIOBANKS

(2013) B. Prainsack et al.   Medical Law Review

Proposed EU data protection regulation is a threat to medical research

(2013) M. C. Ploem et al.   BMJ-British Medical Journal

Sampling Populations of Humans Across the World: ELSI Issues

(2012) Bartha Maria Knoppers et al.   Annual Review of Genomics and Human Genetics

Social networks, web-based tools and diseases: implications for biomedical research

(2012) Fabricio F. Costa   DRUG DISCOVERY TODAY

Biobanks, consent and claims of consensus

(2012) Zubin Master et al.   NATURE METHODS

From patients to partners: participant-centric initiatives in biomedical research

(2012) Jane Kaye et al.   NATURE REVIEWS GENETICS

Mining electronic health records: towards better research applications and clinical care

(2012) Peter B. Jensen et al.   NATURE REVIEWS GENETICS

RHETORIC OR REALITY: WHAT IS THE LEGAL STATUS OF THE CONSENT FORM IN HEALTH-RELATED RESEARCH?

(2012) G. Laurie et al.   Medical Law Review

The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

(2011) Jane Kaye   Annual Review of Genomics and Human Genetics

In Defense of Broad Consent

(2011) GERT HELGESSON   CAMBRIDGE QUARTERLY OF HEALTHCARE ETHICS

From single biobanks to international networks: developing e-governance

(2011) Jane Kaye   HUMAN GENETICS

Informed Consent in Genomics and Genetic Research

(2010) Amy L. McGuire et al.   Annual Review of Genomics and Human Genetics

DataSHIELD: resolving a conflict in contemporary bioscience--performing a pooled analysis of individual-level data without sharing the data

(2010) M. Wolfson et al.   INTERNATIONAL JOURNAL OF EPIDEMIOLOGY

Assessing the Privacy Risks of Data Sharing in Genomics

(2010) C. Heeney et al.   Public Health Genomics

Stewardship of Human Biospecimens, DNA, Genotype, and Clinical Data in the GWAS Era

(2009) Stephen J. O'Brien   Annual Review of Genomics and Human Genetics

RECONSIDERING THE VALUE OF CONSENT IN BIOBANK RESEARCH

(2009) JUDY ALLEN et al.   BIOETHICS

“Broad” consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose

(2009) Carlo Petrini   SOCIAL SCIENCE & MEDICINE

Research ethics and the challenge of whole-genome sequencing

(2007) Amy L. McGuire et al.   NATURE REVIEWS GENETICS