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“Uninsurable because of a genetic test”: a qualitative study of consumer views about the use of genetic test results in Australian life insurance
- Cassandra Muller
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- & Jane Tiller
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Review Article
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Overcoming barriers to single-cell RNA sequencing adoption in low- and middle-income countries
- Tracy Boakye Serebour
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Secondary use of genomic data: patients’ decisions at point of testing and perspectives to inform international data sharing
- Melissa Martyn
- , Emily Forbes
- & Clara Gaff
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Experiences of pediatric cancer patients (age 12–18 years) with extensive germline sequencing for cancer predisposition: a qualitative study
- Sebastian B. B. Bon
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| Open AccessThe interplay of ethics and genetic technologies in balancing the social valuation of the human genome in UNESCO declarations
- Hristina Gaydarska
- , Kayo Takashima
- & Jusaku Minari
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Thirty-years of genetic counselling education in Europe: a growing professional area
- M. Paneque
- , R. O´Shea
- & C. Serra-Juhé
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Review Article
| Open AccessEthical and social reflections on the proposed European Health Data Space
- Ciara Staunton
- , Mahsa Shabani
- & Santa Slokenberga
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Review Article
| Open Access
Publics’ knowledge of, attitude to and motivation towards health-related genomics: a scoping review
- Angela Pearce
- , Lucas A. Mitchell
- & Bronwyn Terrill
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Should non-invasive prenatal testing (NIPT) be used for fetal sex determination? Perspectives and experiences of healthcare professionals
- Zoë Claesen-Bengtson
- , Hilary Bowman-Smart
- & Pascal Borry
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Glowing gels and pipettes aplenty: how do commercial stock image banks portray genetic tests?
- Rachel Horton
- , Leah Boyle
- & Anneke Lucassen
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Psychological impact of additional findings detected by genome-wide Non-Invasive Prenatal Testing (NIPT): TRIDENT-2 study
- Iris M. Bakkeren
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- & Robert-Jan H. Galjaard
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Article
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Ethical considerations for genetic research in low-income countries: perceptions of informed consent, data sharing, and expectations in Nicaragua
- Iris S. Delgado
- , Abigail Outterson
- & Catharine Wang
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Advancing intercontinental collaboration in human genetics: success story of the African and European Young Investigator Forum
- Mohamed Zahir Alimohamed
- , Khuthala Mnika
- & Magdalena Mroczek
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Parents’ attitudes towards research involving genome sequencing of their healthy children: a qualitative study
- Christina Di Carlo
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Review Article
| Open AccessSpecific measures for data-intensive health research without consent: a systematic review of soft law instruments and academic literature
- Julie-Anne R. Smit
- , Menno Mostert
- & Johannes J. M. van Delden
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Viewpoint
| Open AccessA framework for evaluating long-term impact of newborn screening
- Shona Kalkman
- , Ron A. Wevers
- & Mariska M. G. Leeflang
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| Open AccessKnowledge, attitudes and decision regret: a longitudinal survey study of participants offered genome sequencing in the 100,000 Genomes Project
- Michelle Peter
- , Jennifer Hammond
- & Celine Lewis
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‘It’s a nightmare’: informed consent in paediatric genome-wide sequencing. A qualitative expert interview study from Germany and Switzerland
- Johanna Eichinger
- , Bettina Zimmermann
- & Insa Koné
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The reuse of genetic information in research and informed consent
- David Lorenzo
- , Montse Esquerda
- & Francesc Palau
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Dealing with ambivalence in the practice of advanced genetic healthcare: towards an ethical choreography
- Janneke M. L. Kuiper
- , Pascal Borry
- & Ine Van Hoyweghen
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Comment
| Open AccessGenomic testing for rare disease diagnosis—where are we now, and where should we be heading? The reflections of a behavioural scientist
- Celine Lewis
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No need for options for choice for unsolicited findings in informed consent for clinical genetic testing
- Eline M. Bunnik
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Comment on Australian public perspectives on genomic data governance by Lynch et al. in the EJHG
- Elisa J. F. Houwink
- & Eric W. Klee
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Viewpoint
| Open Access
Uptake of funded genomic testing for syndromic and non-syndromic intellectual disability in Australia
- Dylan A. Mordaunt
- , Kim Dalziel
- & Zornitza Stark
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Comment
| Open AccessWhat is health and what do we mean when we say an intervention improves health?
- Fiona Ulph
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Assessing the general public’s view of direct-to-consumer (DTC) genetic testing and their interpretation of DTC website disclaimer messages
- Madison Ruehl
- , Shelly Hovick
- & Kevin Sweet
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| Open AccessReconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory
- Alexander Bernier
- , Fruzsina Molnár-Gábor
- & Lauren Maxwell
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Direct notification by health professionals of relatives at-risk of genetic conditions (with patient consent): views of the Australian public
- Jane M. Tiller
- , Ami Stott
- & Margaret Otlowski
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Consanguineous couples’ experiences and views regarding expanded carrier screening: Barriers and facilitators in the decision-making process
- Sanne van der Hout
- , Anke J. Woudstra
- & Guido de Wert
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Searching for a sense of closure: parental experiences of recontacting after a terminated pregnancy for congenital malformations
- Ileen Slegers
- , Kathelijn Keymolen
- & Maaike Fobelets
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Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing
- Jane Tiller
- , Andrew Bakshi
- & Paul Lacaze
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Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations
- Fiona Lynch
- , Yan Meng
- & Danya F. Vears
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Old and new challenges regarding comparable and viable data sharing in population-scale genomic research
- Aviad Raz
- , Jusaku Minari
- & Ruth Horn
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| Open AccessImmortal data: a qualitative exploration of patients’ understandings of genomic data
- Kate Lyle
- , Susie Weller
- & Anneke Lucassen
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Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening
- Melissa Raspa
- , Oksana Kutsa
- & Barbara B. Biesecker
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A practical checklist for return of results from genomic research in the European context
- Danya F. Vears
- , Nina Hallowell
- & Isabelle Budin-Ljøsne
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Limitations, concerns and potential: attitudes of healthcare professionals toward preimplantation genetic testing using polygenic risk scores
- Maria Siermann
- , Ophelia Valcke
- & Pascal Borry
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Experiences of nonpregnant couples after receiving reproductive genetic carrier screening results in Belgium
- Eva Van Steijvoort
- , Hilde Peeters
- & Pascal Borry
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| Open Access
Views of healthcare professionals on the inclusion of genes associated with non-syndromic hearing loss in reproductive genetic carrier screening
- Lucinda Freeman
- , Martin B. Delatycki
- & Edwin P. Kirk
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Article
| Open Access
GBA/GBN-position on the feedback of incidental findings in biobank-based research: consensus-based workflow for hospital-based biobanks
- Joerg Geiger
- , Joerg Fuchs
- & Roland Jahns
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Attitudes of professional stakeholders towards implementation of reproductive genetic carrier screening: a systematic review
- Laurent Pasquier
- , Maryn Reyneke
- & Pascal Borry
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Article
| Open Access
Balancing the safeguarding of privacy and data sharing: perceptions of genomic professionals on patient genomic data ownership in Australia
- Yuwan Malakar
- , Justine Lacey
- & Denis C. Bauer
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| Open Access
Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study
- Roberta Biasiotto
- , Maria Kösters
- & Deborah Mascalzoni
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Viewpoint
| Open AccessResearch priorities in psychiatric genetic counselling: how to talk to children and adolescents about genetics and psychiatric disorders
- Jessica Mundy
- , Helena L. Davies
- & Ramona Moldovan
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Article
| Open AccessNon-invasive prenatal testing in Germany: a unique ethical and policy landscape
- Hilary Bowman-Smart
- , Claudia Wiesemann
- & Ruth Horn
