What can data trusts for health research learn from participatory governance in biobanks?

Future-proofing biobanks’ governance

(2020) Felix Gille et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Trust, trustworthiness and sharing patient data for research

(2020) Mark Sheehan et al.   JOURNAL OF MEDICAL ETHICS

Public involvement in the governance of population-level biomedical research: unresolved questions and future directions

(2020) Sonja Erikainen et al.   JOURNAL OF MEDICAL ETHICS

Patient and public involvement: Two sides of the same coin or different coins altogether?

(2019) Matthew S. McCoy et al.   BIOETHICS

Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence

(2019) Shona Kalkman et al.   JOURNAL OF MEDICAL ETHICS

Effect of deliberation on the public’s attitudes toward consent policies for biobank research

(2018) Tom Tomlinson et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Potentials and Challenges of the Health Data Cooperative Model

(2018) Ilse van Roessel et al.   Public Health Genomics

Big data from electronic health records for early and late translational cardiovascular research: challenges and potential

(2017) Harry Hemingway et al.   EUROPEAN HEART JOURNAL

The RUDY study: using digital technologies to enable a research partnership

(2017) Harriet J A Teare et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Deliberative public opinion

(2017) Kieran C. O’Doherty   HISTORY OF THE HUMAN SCIENCES

The other side of the coin: Harm due to the non-use of health-related data

(2017) Kerina H. Jones et al.   INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS

Biomedical Big Data: New Models of Control Over Access, Use and Governance

(2017) Effy Vayena et al.   Journal of Bioethical Inquiry

Creating a data resource: what will it take to build a medical information commons?

(2017) Patricia A. Deverka et al.   Genome Medicine

The Precision Medicine Initiative’s All of Us Research Program: an agenda for research on its ethical, legal, and social issues

(2016) Pamela L. Sankar et al.   GENETICS IN MEDICINE

Big health data: the need to earn public trust

(2016) Tjeerd-Pieter van Staa et al.   BMJ-British Medical Journal

Big health data: the need to earn public trust

(2016) Tjeerd-Pieter van Staa et al.   BMJ-British Medical Journal

Linking Broad Consent to Biobank Governance: Support From a Deliberative Public Engagement in California

(2015) Sarah B. Garrett et al.   AMERICAN JOURNAL OF BIOETHICS

The social licence for research: whycare.dataran into trouble

(2015) Pam Carter et al.   JOURNAL OF MEDICAL ETHICS

Comparison of consumers’ views on electronic data sharing for healthcare and research

(2015) Katherine K Kim et al.   JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION

Which public and why deliberate? – A scoping review of public deliberation in public health and health policy research

(2015) Chris Degeling et al.   SOCIAL SCIENCE & MEDICINE

Have We Asked Too Much of Consent?

(2014) Barbara A. Koenig   HASTINGS CENTER REPORT

The Mayo Clinic Biobank: A Building Block for Individualized Medicine

(2013) Janet E. Olson et al.   MAYO CLINIC PROCEEDINGS

Cohort Profile: The ‘Children of the 90s’—the index offspring of the Avon Longitudinal Study of Parents and Children

(2012) Andy Boyd et al.   INTERNATIONAL JOURNAL OF EPIDEMIOLOGY

Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation

(2012) Kieran C. O'Doherty et al.   SOCIAL SCIENCE & MEDICINE

Reflexive governance in biobanking: on the value of policy led approaches and the need to recognise the limits of law

(2011) Graeme Laurie   HUMAN GENETICS

The Michigan BioTrust for Health: Using Dried Bloodspots for Research to Benefit the Community While Respecting the Individual

(2011) Denise Chrysler et al.   JOURNAL OF LAW MEDICINE & ETHICS

From consent to institutions: Designing adaptive governance for genomic biobanks

(2011) Kieran C. O’Doherty et al.   SOCIAL SCIENCE & MEDICINE