Featured
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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
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Article |
Current management of transition of young people affected by rare renal conditions in the ERKNet
- Martin Kreuzer
- , Jens Drube
- & Antonia Bouts
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Article |
Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study
- Janine Vetsch
- , Claire E. Wakefield
- & Richard J. Cohn
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Viewpoint |
Germline genome editing: public dialogue is urgent but not self-evident
- Boy Vijlbrief
- , Sam Riedijk
- & Robert Hofstra
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Brief Communication
| Open AccessGenetic discrimination by Australian insurance companies: a survey of consumer experiences
- Jane Tiller
- , Susan Morris
- & Paul Lacaze
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Viewpoint |
After the fact—the case of CRISPR babies
- Martin Sand
- , Annelien L. Bredenoord
- & Karin R. Jongsma
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Viewpoint |
Searching for secondary findings: considering actionability and preserving the right not to know
- Bertrand Isidor
- , Sophie Julia
- & Marie Vincent
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Article
| Open AccessDo health professionals value genomic testing? A discrete choice experiment in inherited cardiovascular disease
- James Buchanan
- , Edward Blair
- & Sarah Wordsworth
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Article
| Open AccessAttitudes of blood donors to their sample and data donation for biobanking
- Vera Raivola
- , Karoliina Snell
- & Jukka Partanen
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Viewpoint |
Population genetic screening: current issues in a European country
- Laurent Pasquier
- , Bertrand Isidor
- & Grégoire Moutel
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Article |
Trends in BRCA testing and socioeconomic deprivation
- Antony P. Martin
- , Gabriel Pedra
- & Kathryn Lynn Greenhalgh
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Policy
| Open AccessThe GDPR and the research exemption: considerations on the necessary safeguards for research biobanks
- Ciara Staunton
- , Santa Slokenberga
- & Deborah Mascalzoni
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Article
| Open AccessStakeholder views and attitudes towards prenatal and postnatal transplantation of fetal mesenchymal stem cells to treat Osteogenesis Imperfecta
- Melissa Hill
- , Celine Lewis
- & Lyn S Chitty
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Article
| Open AccessContinental drift? Do European clinical genetic testing laboratories have a patent problem?
- Johnathon Liddicoat
- , Kathleen Liddell
- & Michael M. Hopkins
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Review Article |
Characteristics and quality of genetics and genomics mobile apps: a systematic review
- Divya Talwar
- , Yu-Lyu Yeh
- & Lei-Shih Chen
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Comment |
Expanded reproductive carrier screening—how can we do the most good and cause the least harm?
- Martin B. Delatycki
- , Nigel Laing
- & Edwin Kirk
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Article
| Open AccessFeasibility of couple-based expanded carrier screening offered by general practitioners
- Juliette Schuurmans
- , Erwin Birnie
- & Irene M. van Langen
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Article |
Autonomous decision-making for antenatal screening in Pakistan: views held by women, men and health professionals in a low–middle income country
- Shenaz Ahmed
- , Hussain Jafri
- & Mushtaq Ahmed
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Article |
Exome sequencing in clinical settings: preferences and experiences of parents of children with rare diseases (SEQUAPRE study)
- Aline Chassagne
- , Aurore Pélissier
- & Laurence Faivre
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Article |
Motivations for data sharing—views of research participants from four European countries: A DIRECT study
- Nisha Shah
- , Victoria Coathup
- & Jane Kaye
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Article |
Delivering effective genetic services for patients and families affected by cleft lip and/or palate
- Nicola Marie Stock
- , Rhona MacLeod
- & Jill Clayton-Smith
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Article
| Open AccessAustralians’ views and experience of personal genomic testing: survey findings from the Genioz study
- Jacqueline Savard
- , Chriselle Hickerton
- & Sylvia A. Metcalfe
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Article |
Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease
- Álvaro Mendes
- , Milena Paneque
- & Jorge Sequeiros
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Article
| Open AccessNewborn dried blood spot samples in Denmark: the hidden figures of secondary use and research participation
- Francisca Nordfalk
- & Claus Thorn Ekstrøm
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Article |
Patients v. Myriad or the GDPR Access Right v. the EU Database Right
- Jasper A. Bovenberg
- & Mara Almeida
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Article |
Psychosocial and behavioral outcomes of genomic testing in cancer: a systematic review
- Tatiane Yanes
- , Amanda M. Willis
- & Megan Best
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Article |
Analysis of VUS reporting, variant reinterpretation and recontact policies in clinical genomic sequencing consent forms
- Danya F. Vears
- , Emilia Niemiec
- & Pascal Borry
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Article |
Current practices for access, compensation, and prioritization in biobanks. Results from an interview study
- Holger Langhof
- , Hannes Kahrass
- & Daniel Strech
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Article |
Incidental or secondary findings: an integrative and patient-inclusive approach to the current debate
- Marlies Saelaert
- , Heidi Mertes
- & Ignaas Devisch
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Article
| Open AccessHow are genetic test results being used by Australian life insurers?
- K. Barlow-Stewart
- , M. Liepins
- & M. Otlowski
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Article
| Open AccessPatient preferences for massively parallel sequencing genetic testing of colorectal cancer risk: a discrete choice experiment
- Deirdre Weymann
- , David L. Veenstra
- & Dean A. Regier
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Viewpoint |
More than an information service: are counselling skills needed by genetics professionals in the genomic era?
- Heather Skirton
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Viewpoint |
The FAIR guiding principles for data stewardship: fair enough?
- Martin Boeckhout
- , Gerhard A. Zielhuis
- & Annelien L. Bredenoord
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Brief Communication
| Open AccessGenes flow by the channels of culture: the genetic imprint of matrilocality in Ngazidja, Comoros Islands
- Stéphane Mazières
- , Pauline Oviedo
- & Jacques Chiaroni
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Distress, uncertainty, and positive experiences associated with receiving information on personal genomic risk of melanoma
- Amelia K Smit
- , Ainsley J Newson
- & Anne E Cust
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Article
| Open AccessAustralians’ views on personal genomic testing: focus group findings from the Genioz study
- Sylvia A Metcalfe
- , Chriselle Hickerton
- & Ainsley J Newson
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Article
| Open AccessUsing a genetic test result in the care of family members: how does the duty of confidentiality apply?
- Michael Parker
- & Anneke Lucassen
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Article |
Recontacting or not recontacting? A survey of current practices in clinical genetics centres in Europe
- Fabio Sirchia
- , Daniele Carrieri
- & Susan E. Kelly
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Article |
Genetic diseases and information to relatives: practical and ethical issues for professionals after introduction of a legal framework in France
- Diane d’Audiffret Van Haecke
- & Sandrine de Montgolfier
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Brief Communication |
Intentions to share exome sequencing results with family members: exploring spousal beliefs and attitudes
- Erin Turbitt
- , Megan C Roberts
- & William MP Klein
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Article |
A randomized controlled study of a consent intervention for participating in an NIH genome sequencing study
- Erin Turbitt
- , Paola P Chrysostomou
- & Barbara B Biesecker
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Article |
Genetic defects in mtDNA-encoded protein translation cause pediatric, mitochondrial cardiomyopathy with early-onset brain disease
- Rick Kamps
- , Radek Szklarczyk
- & Hubert J. M. Smeets
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Article
| Open AccessViews of rare disease participants in a UK whole-genome sequencing study towards secondary findings: a qualitative study
- Michael P Mackley
- , Edward Blair
- & Elizabeth Ormondroyd
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Article
| Open AccessThe RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers
- Sabina Gainotti
- , Paola Torreri
- & Domenica Taruscio
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Article |
Interpretations of autonomous decision-making in antenatal genetic screening among women in China, Hong Kong and Pakistan
- Shenaz Ahmed
- , Huso Yi
- & Mushtaq Ahmed
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Article |
Psychosocial impact on mothers receiving expanded newborn screening results
- Kathleen O’Connor
- , Tara Jukes
- & Chitra Prasad
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Article |
Knowledge, experiences and attitudes concerning genetics among retinoblastoma survivors and parents
- Jessica A Hill
- , Amal Gedleh
- & Helen Dimaras
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Article |
Cost of cancer diagnosis using next-generation sequencing targeted gene panels in routine practice: a nationwide French study
- Patricia Marino
- , Rajae Touzani
- & Dominique Vaur