Featured
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Article |
‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research
- Pauline McCormack
- , Anna Kole
- & Simon Woods
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Article
| Open AccessImproving the informed consent process in international collaborative rare disease research: effective consent for effective research
- Sabina Gainotti
- , Cathy Turner
- & Deborah Mascalzoni
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Clinical Utility Gene Card |
Clinical utility gene card for: Familial platelet disorder with associated myeloid malignancies
- Tim Ripperger
- , Kiran Tawana
- & Doris Steinemann
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Review |
A decision tool to guide the ethics review of a challenging breed of emerging genomic projects
- Yann Joly
- , Derek So
- & Bartha Knoppers
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Article
| Open AccessAttitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research
- Anna Middleton
- , Katherine I Morley
- & Michael Parker
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Review |
Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature
- Alma Husedzinovic
- , Dominik Ose
- & Eva C Winkler
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Policy
| Open AccessWhole-genome sequencing in newborn screening? A statement on the continued importance of targeted approaches in newborn screening programmes
- Heidi Carmen Howard
- , Bartha Maria Knoppers
- & Pascal Borry
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Article |
Consent procedures in pediatric biobanks
- Noor AA Giesbertz
- , Annelien L Bredenoord
- & Johannes JM van Delden
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Policy
| Open AccessGenomic cloud computing: legal and ethical points to consider
- Edward S Dove
- , Yann Joly
- & Bartha M Knoppers
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Article |
Scientists’ perspectives on consent in the context of biobanking research
- Zubin Master
- , Lisa Campo-Engelstein
- & Timothy Caulfield
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Article
| Open AccessTo disclose, or not to disclose? Context matters
- Vasiliki Rahimzadeh
- , Denise Avard
- & Daniel Sinnett
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Article
| Open AccessDynamic consent: a patient interface for twenty-first century research networks
- Jane Kaye
- , Edgar A Whitley
- & Karen Melham
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Article
| Open AccessManaging clinically significant findings in research: the UK10K example
- Jane Kaye
- , Matthew Hurles
- & Tim Spector
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Policy |
Incidental findings: the time is not yet ripe for a policy for biobanks
- Jennifer Viberg
- , Mats G Hansson
- & Pär Segerdahl
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Article |
Criteria for fairly allocating scarce health-care resources to genetic tests: which matter most?
- Wolf H Rogowski
- , Scott D Grosse
- & Georg Marckmann
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Article |
Factors influencing public participation in biobanking
- Mamoun Ahram
- , Areej Othman
- & Ebtihal Mustafa
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Short Report |
Clarifying assent in pediatric research
- Noor A A Giesbertz
- , Annelien L Bredenoord
- & Johannes J M van Delden
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Article |
The policies of ethics committees in the management of biobanks used for research: an Italian survey
- Corinna Porteri
- , Elena Togni
- & Patrizio Pasqualetti
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Letter |
Autonomy and the patient's right ‘not to know’ in clinical whole-genomic sequencing
- Anne Townsend
- , Francois Rousseau
- & Patricia Birch
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Article
| Open AccessBroad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?
- Kristin Solum Steinsbekk
- , Bjørn Kåre Myskja
- & Berge Solberg
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Policy |
Spanish regulatory approach for Biobanking
- Javier Arias-Diaz
- , María C Martín-Arribas
- & Carlos Alonso
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Article |
Non-invasive prenatal testing for single gene disorders: exploring the ethics
- Zuzana Deans
- , Melissa Hill
- & Celine Lewis
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Article
| Open AccessA tiered-layered-staged model for informed consent in personal genome testing
- Eline M Bunnik
- , A Cecile J W Janssens
- & Maartje H N Schermer
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Article |
How can ethics relate to science? The case of stem cell research
- Ana Sofia Carvalho
- & João Ramalho-Santos
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Short Report |
Public support and consent preference for biomedical research and biobanking in Jordan
- Mamoun Ahram
- , Areej Othman
- & Manal Shahrouri
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Review |
To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts
- Gabrielle M Christenhusz
- , Koenraad Devriendt
- & Kris Dierickx
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Policy
| Open AccessToward a roadmap in global biobanking for health
- Jennifer R Harris
- , Paul Burton
- & Kurt Zatloukal
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Article |
Publics and biobanks: Pan-European diversity and the challenge of responsible innovation
- George Gaskell
- , Herbert Gottweis
- & Alexandra Soulier
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Policy |
The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe
- Ros Hastings
- , Guido de Wert
- & Martina C Cornel
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Article |
Opinions and intentions of parents of an autistic child toward genetic research results: two typical profiles
- Laurence Baret
- & Beatrice Godard
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Article |
Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?
- Heidi Carmen Howard
- , Denise Avard
- & Pascal Borry
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Article |
Rapid aneuploidy detection or karyotyping? Ethical reflection
- Antina de Jong
- , Wybo J Dondorp
- & Guido MWR de Wert
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Article |
Not so simple: a quasi-experimental study of how researchers adjudicate genetic research results
- Robin Zoe Hayeems
- , Fiona Alice Miller
- & Jessica Peace Bytautas
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Article |
Children, biobanks and the scope of parental consent
- Kristien Hens
- , Jean-Jacques Cassiman
- & Kris Dierickx
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Policy |
Retrospective access to data: the ENGAGE consent experience
- Anne Marie Tassé
- , Isabelle Budin-Ljøsne
- & Jennifer R Harris