Privacy in the age of medical big data

WN Price, IG Cohen - Nature medicine, 2019 - nature.com
Big data has become the ubiquitous watch word of medical innovation. The rapid
development of machine-learning techniques and artificial intelligence in particular has …

The need for a human pangenome reference sequence

KH Miga, T Wang - Annual Review of Genomics and Human …, 2021 - annualreviews.org
The reference human genome sequence is inarguably the most important and widely used
resource in the fields of human genetics and genomics. It has transformed the conduct of …

Toward precision medicine: building a knowledge network for biomedical research and a new taxonomy of disease

National Research Council, Life Studies… - 2011 - books.google.com
Motivated by the explosion of molecular data on humans-particularly data associated with
individual patients-and the sense that there are large, as-yet-untapped opportunities to use …

Routes for breaching and protecting genetic privacy

Y Erlich, A Narayanan - Nature Reviews Genetics, 2014 - nature.com
We are entering an era of ubiquitous genetic information for research, clinical care and
personal curiosity. Sharing these data sets is vital for progress in biomedical research …

Does deidentification of data from wearable devices give us a false sense of security? A systematic review

L Chikwetu, Y Miao, MK Woldetensae, D Bell… - The Lancet Digital …, 2023 - thelancet.com
Wearable devices have made it easier to generate and share data collected on individuals.
This systematic review seeks to investigate whether deidentifying data from wearable …

From genetic privacy to open consent

JE Lunshof, R Chadwick, DB Vorhaus… - Nature Reviews …, 2008 - nature.com
Recent advances in high-throughput genomic technologies are showing concrete results in
the form of an increasing number of genome-wide association studies and in the publication …

Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working …

RR Fabsitz, A McGuire, RR Sharp… - Circulation …, 2010 - Am Heart Assoc
In January 2009, the National Heart, Lung, and Blood Institute convened a 28-member
multidisciplinary Working Group to update the recommendations of a 2004 National Heart …

Learning your identity and disease from research papers: information leaks in genome wide association study

R Wang, YF Li, XF Wang, H Tang, X Zhou - Proceedings of the 16th ACM …, 2009 - dl.acm.org
Genome-wide association studies (GWAS) aim at discovering the association between
genetic variations, particularly single-nucleotide polymorphism (SNP), and common …

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 …

Lessons from HeLa cells: the ethics and policy of biospecimens

LM Beskow - Annual review of genomics and human genetics, 2016 - annualreviews.org
Human biospecimens have played a crucial role in scientific and medical advances.
Although the ethical and policy issues associated with biospecimen research have long …