Featured
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Correspondence
| Open AccessThe question of WGS’s clinical utility remains unanswered
- Florian Battke
- , Björn Schulte
- & Saskia Biskup
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Article |
Normalising life at risk of Huntington’s disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination
- Annet Wauters
- & Ine Van Hoyweghen
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Article |
Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research
- Christine R. Critchley
- , Jennifer Fleming
- & Ian Kerridge
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Policy |
ESHG warns against misuses of genetic tests and biobanks for discrimination purposes
- Francesca Forzano
- , Maurizio Genuardi
- & Yves Moreau
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Article
| Open AccessThe ethics of genomic medicine: redefining values and norms in the UK and France
- Marie Gaille
- , Ruth Horn
- & Carine Vassy
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Article |
A randomized experimental study to test the effects of discussing uncertainty during cancer genetic counseling: different strategies, different outcomes?
- Niki M. Medendorp
- , Marij A. Hillen
- & Ellen M. A. Smets
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Article |
The impact of needs-based education on the change of knowledge and attitudes towards medical genetics in medical students
- Paola Čargonja
- , Martina Mavrinac
- & Nina Pereza
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Article
| Open AccessReflections on dynamic consent in biomedical research: the story so far
- Harriet J. A. Teare
- , Megan Prictor
- & Jane Kaye
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Article |
Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
- Gabriel Lázaro-Muñoz
- , Laura Torgerson
- & Stacey Pereira
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Article
| Open AccessSecondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany
- Gesine Richter
- , Christoph Borzikowsky
- & Michael Krawczak
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Article
| Open AccessPerceptions of genetic testing in patients with hereditary chronic pancreatitis and their families: a qualitative triangulation
- Regina Müller
- , Ali A. Aghdassi
- & Sabine Salloch
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Article |
Non-invasive prenatal testing (NIPT): societal pressure or freedom of choice? A vignette study of Dutch citizens’ attitudes
- Adriana Kater-Kuipers
- , Iris M. Bakkeren
- & Eline M. Bunnik
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Article |
Gene selection for the Australian Reproductive Genetic Carrier Screening Project (“Mackenzie’s Mission”)
- Edwin P. Kirk
- , Royston Ong
- & Martin B. Delatycki
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Article
| Open AccessDelivering genome sequencing for rapid genetic diagnosis in critically ill children: parent and professional views, experiences and challenges
- Melissa Hill
- , Jennifer Hammond
- & Lyn S. Chitty
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Article |
Web-based return of BRCA2 research results: one-year genetic counselling experience in Iceland
- Vigdis Stefansdottir
- , Eirny Thorolfsdottir
- & Jon J. Jonsson
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Viewpoint
| Open AccessProfessional duties are now considered legal duties of care within genomic medicine
- Middleton Anna
- , Patch Christine
- & Atutornu Jerome
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Article |
Judging in the genomic era: judges’ genetic knowledge, confidence and need for training
- Fatos Selita
- , Vanessa Smereczynska
- & Yulia Kovas
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Article |
Development and validation of a measure of comprehension of genomic screening—negative results (CoG-NR)
- Gail E. Henderson
- , Molly Ewing
- & Teresa P. Edwards
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Policy
| Open AccessBBMRI-ERIC’s contributions to research and knowledge exchange on COVID-19
- Petr Holub
- , Lukasz Kozera
- & Michaela Th. Mayrhofer
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Policy
| Open AccessConnecting data, tools and people across Europe: ELIXIR’s response to the COVID-19 pandemic
- Niklas Blomberg
- & Katharina B. Lauer
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Article |
Management of information within Portuguese families with Huntington disease: a transgenerational process for putting the puzzle together
- Carla Roma Oliveira
- , Álvaro Mendes
- & Liliana Sousa
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Article |
Assessing the stability of biobank donor preferences regarding sample use: evidence supporting the value of dynamic consent
- Joel E. Pacyna
- , Jennifer B. McCormick
- & Richard R. Sharp
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Article |
The uptake of predictive DNA testing in 40 families with a pathogenic BRCA1/BRCA2 variant. An evaluation of the proband-mediated procedure
- Fred H. Menko
- , Kiki N. Jeanson
- & Lizet E. van der Kolk
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Comment |
The GDPR, secondary research purposes and global data sharing—one-wheel too many
- Sirpa Soini
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Article
| Open AccessWillingness to donate genomic and other medical data: results from Germany
- Torsten H. Voigt
- , Verena Holtz
- & Barbara Prainsack
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Brief Communication
| Open AccessGene therapy regulation: could in-body editing fall through the net?
- Miranda Mourby
- & Michael Morrison
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Article |
How the “control-fate continuum” helps explain the genetic testing decision-making process: a grounded theory study
- Bettina M. Zimmermann
- , David Shaw
- & Insa Koné
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Correspondence |
Detection and protection mechanisms against vulnerabilities are needed in blockchain applications
- Yoshiyasu Takefuji
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Review Article
| Open AccessDisruptive and avoidable: GDPR challenges to secondary research uses of data
- David Peloquin
- , Michael DiMaio
- & Mark Barnes
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Article |
Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data
- Gaia Barazzetti
- , Francesca Bosisio
- & Brenda Spencer
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Article |
Clinical genomic testing: what matters to key stakeholders?
- Stephanie Best
- , Zornitza Stark
- & Ilias Goranitis
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Article
| Open AccessRecommendations for designing genetic test reports to be understood by patients and non-specialists
- George D. Farmer
- , Harry Gray
- & Alexandra L. J. Freeman
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Article
| Open AccessParents’ motivations, concerns and understanding of genome sequencing: a qualitative interview study
- Celine Lewis
- , Saskia Sanderson
- & Lyn S. Chitty
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Article
| Open AccessDevelopment and mixed-methods evaluation of an online animation for young people about genome sequencing
- Celine Lewis
- , Saskia C. Sanderson
- & Lyn S. Chitty
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Article
| Open AccessDwarna: a blockchain solution for dynamic consent in biobanking
- Nicholas Mamo
- , Gillian M. Martin
- & Jean-Paul Ebejer
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Article
| Open AccessMembers of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
- Anna Middleton
- , Richard Milne
- & Katherine I. Morley
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Viewpoint |
Lessons from Ciência Viva: how teaching human genetics to XXIst century students must go beyond the classroom
- Meghan Quint
- & Olga Amaral
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Article |
Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia
- Jan Charbonneau
- , Dianne Nicol
- & Christine Critchley
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Policy
| Open AccessESHG PPPC Comments on postmortem use of genetic data for research purposes
- Florence Fellmann
- , Emmanuelle Rial-Sebbag
- & Francesca Forzano
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Article
| Open AccessGP-provided couple-based expanded preconception carrier screening in the Dutch general population: who accepts the test-offer and why?
- Juliette Schuurmans
- , Erwin Birnie
- & Mirjam Plantinga
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Article |
Ethical, legal, and social issues (ELSI) in rare diseases: a landscape analysis from funders
- Adam L. Hartman
- , Anneliene Hechtelt Jonker
- & Rosario Isasi
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Article
| Open AccessRethinking the ethical principles of genomic medicine services
- Stephanie B. Johnson
- , Ingrid Slade
- & Mackenzie Graham
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Article
| Open AccessEstimating cumulative point prevalence of rare diseases: analysis of the Orphanet database
- Stéphanie Nguengang Wakap
- , Deborah M. Lambert
- & Ana Rath
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Review Article
| Open AccessStakeholders’ perspectives on the post-mortem use of genetic and health-related data for research: a systematic review
- Marieke A. R. Bak
- , M. Corrette Ploem
- & Dick L. Willems