‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research

Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project

(2015) Sylviane Darquy et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Opinions of Young Adults on Re-Consenting for Biobanking

(2015) Amanda Rush et al.   JOURNAL OF PEDIATRICS

The Challenge for a European Network of Biobanks for Rare Diseases Taken up by RD-Connect

(2015) Lucia Monaco et al.   PATHOBIOLOGY

International Charter of principles for sharing bio-specimens and data

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

Setting up strategies: patient inclusion in biobank and genomics research in Europe

(2014) Pauline McCormack et al.   Orphanet Journal of Rare Diseases

The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia

(2013) Catherine L. Bladen et al.   HUMAN MUTATION

Rare-disease genetics in the era of next-generation sequencing: discovery to translation

(2013) Kym M. Boycott et al.   NATURE REVIEWS GENETICS

Informed consent for whole genome sequencing: A qualitative analysis of participant expectations and perceptions of risks, benefits, and harms

(2012) Holly K. Tabor et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

ADEQUATE TRUST AVAILS, MISTAKEN TRUST MATTERS: ON THE MORAL RESPONSIBILITY OF DOCTORS AS PROXIES FOR PATIENTS' TRUST IN BIOBANK RESEARCH

(2012) LINUS JOHNSSON et al.   BIOETHICS

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

(2012) Els Geelen et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Informed consent: A broken contract

(2012) Erika Check Hayden   NATURE

Children and biobanks: a review of the ethical and legal discussion

(2011) Kristien Hens et al.   HUMAN GENETICS

Biobanks and the phantom public

(2011) Herbert Gottweis et al.   HUMAN GENETICS

Connecting the public with biobank research: reciprocity matters

(2011) Herbert Gottweis et al.   NATURE REVIEWS GENETICS

From consent to institutions: Designing adaptive governance for genomic biobanks

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

Consent for genetic research in the Framingham Heart Study

(2010) Daniel Levy et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

The Role of Biobanking in Rare Diseases: European Consensus Expert Group Report

(2010) Hanns Lochmüller et al.   BIOPRESERVATION AND BIOBANKING

The case for a global rare-diseases registry

(2010) Christopher B Forrest et al.   LANCET

Public and Biobank Participant Attitudes toward Genetic Research Participation and Data Sharing

(2010) A.A. Lemke et al.   Public Health Genomics

DNA data sharing: research participants' perspectives

(2008) Amy L McGuire et al.   GENETICS IN MEDICINE