Genes, cells, and biobanks: Yes, there’s still a consent problem

Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks

(2017) Laura A. Siminoff et al.   Genetic Testing and Molecular Biomarkers

Donor’s support tool: Enabling informed secondary use of patient’s biomaterial and personal data

(2017) Haridimos Kondylakis et al.   INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS

Controversial patient-consent proposal left out of research-ethics reforms

(2017) Sara Reardon   NATURE

Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies

(2016) Mhairi Aitken et al.   BMC Medical Ethics

Global trends on fears and concerns of genetic discrimination: a systematic literature review

(2016) Annet Wauters et al.   JOURNAL OF HUMAN GENETICS

Understanding the Public’s Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey

(2016) Raymond Gene De Vries et al.   PLoS One

Confronting stem cell hype

(2016) T. Caulfield et al.   SCIENCE

When Children Become Adults: Should Biobanks Re-Contact?

(2016) Noor A. A. Giesbertz et al.   PLOS MEDICINE

The U.S. National Biobank and (No) Consensus on Informed Consent

(2015) Zubin Master   AMERICAN JOURNAL OF BIOETHICS

Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis

(2015) Flavio D’Abramo et al.   BMC Medical Ethics

Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study

(2015) Chrysanthi Papoutsi et al.   BMC Medical Informatics and Decision Making

Obama's Precision Medicine Initiative

(2015) Sharon F. Terry   Genetic Testing and Molecular Biomarkers

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

(2015) Nanibaa' A. Garrison et al.   GENETICS IN MEDICINE

Moral Concerns and the Willingness to Donate to a Research Biobank

(2015) Tom Tomlinson et al.   JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION

Policy recommendations for addressing privacy challenges associated with cell-based research and interventions

(2014) Ubaka Ogbogu et al.   BMC Medical Ethics

Scientists’ perspectives on consent in the context of biobanking research

(2014) Zubin Master et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

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

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

Public Awareness of Genetic Nondiscrimination Laws in Four States and Perceived Importance of Life Insurance Protections

(2014) Alicia A. Parkman et al.   Journal of Genetic Counseling

Newspaper coverage of biobanks

(2014) Ubaka Ogbogu et al.   PeerJ

Biobanks containing clinical specimens: Defining characteristics, policies, and practices

(2013) Teresa Edwards et al.   CLINICAL BIOCHEMISTRY

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

(2013) Susanne B. Haga et al.   Genetic Testing and Molecular Biomarkers

Public opinion on policy issues in genetics and genomics

(2013) Rene Almeling et al.   GENETICS IN MEDICINE

Characterizing biobank organizations in the U.S.: results from a national survey

(2013) Gail E Henderson et al.   Genome Medicine

Biobanking, Consent, and Control: A Survey of Albertans on Key Research Ethics Issues

(2012) Timothy Caulfield et al.   BIOPRESERVATION AND BIOBANKING

Biobanks, consent and claims of consensus

(2012) Zubin Master et al.   NATURE METHODS

Active choice but not too active: Public perspectives on biobank consent models

(2011) Christian M. Simon et al.   GENETICS IN MEDICINE

Waiting for the Revolution

(2011) E. Marshall   SCIENCE

To the Barricades!

(2010) Henry T. Greely   AMERICAN JOURNAL OF BIOETHICS

Public Opinion about the Importance of Privacy in Biobank Research

(2009) David J. Kaufman et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Public Perspectives on Informed Consent for Biobanking

(2009) Juli Murphy et al.   AMERICAN JOURNAL OF PUBLIC HEALTH

Genetic exceptionalism. Too much of a good thing?

(2009) James P Evans et al.   GENETICS IN MEDICINE

Research Ethics Recommendations for Whole-Genome Research: Consensus Statement

(2008) Timothy Caulfield et al.   PLOS BIOLOGY