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 …

Biobanking in health care: evolution and future directions

L Coppola, A Cianflone, AM Grimaldi… - Journal of translational …, 2019 - Springer
Background The aim of the present review is to discuss how the promising field of
biobanking can support health care research strategies. As the concept has evolved over …

A Belmont reboot: Building a normative foundation for human research in the 21st century

KB Brothers, SM Rivera, RJ Cadigan… - The Journal of Law …, 2019 - journals.sagepub.com
Over the past decade, scientists and ethicists began to feel that existing regulations for
oversight of human research did not align well with emerging practices and technologies …

Ethical aspects of data sharing and research participant protections.

MW Ross, MY Iguchi, S Panicker - American Psychologist, 2018 - psycnet.apa.org
Open access is fast becoming the norm across science. Sharing research data broadly has
the potential to accelerate scientific progress, optimize the value of data, and promote …

Dynamic consent: a potential solution to some of the challenges of modern biomedical research

I Budin-Ljøsne, HJA Teare, J Kaye, S Beck… - BMC medical …, 2017 - Springer
Background Innovations in technology have contributed to rapid changes in the way that
modern biomedical research is carried out. Researchers are increasingly required to …

Reflections on dynamic consent in biomedical research: the story so far

HJA Teare, M Prictor, J Kaye - European journal of human genetics, 2021 - nature.com
Dynamic consent (DC) was originally developed in response to challenges to the informed
consent process presented by participants agreeing to 'future research'in biobanking. In the …

Digital health: meeting the ethical and policy challenges

E Vayena, T Haeusermann… - Swiss medical …, 2018 - research-collection.ethz.ch
Digital health encompasses a wide range of novel digital technologies related to health and
medicine. Such technologies rely on recent advances in the collection and analysis of ever …

Sharing and reuse of individual participant data from clinical trials: principles and recommendations

C Ohmann, R Banzi, S Canham, S Battaglia, M Matei… - BMJ open, 2017 - bmjopen.bmj.com
Objectives We examined major issues associated with sharing of individual clinical trial data
and developed a consensus document on providing access to individual participant data …

A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States

NA Garrison, NA Sathe, AHM Antommaria… - Genetics in …, 2016 - nature.com
Purpose: In 2011, an Advanced Notice of Proposed Rulemaking proposed that de-identified
human data and specimens be included in biobanks only if patients provide consent. The …

Broad consent for biobanks is best–provided it is also deep

RB Mikkelsen, M Gjerris, G Waldemar, P Sandøe - BMC medical ethics, 2019 - Springer
Background As biobank research has become increasingly widespread within biomedical
research, study-specific consent to each study, a model derived from research involving …