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Co-creating the experience of consent for newborn genome sequencing: The Generation Study

Public Health Genomics

Mathilde Leblond, Mirabai Galati, Jonathan Roberts, Harriet Etheredge, Nancy Willacy, Öznur Özkurt, Amanda Pichini

2024

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Challenges of uncertainty in prenatal decision-making: Skeletal dysplasias

Journal of Law, Medicine & Ethics

Naila Ramji, Marie-Eve Robinson, Gregory P. Moore

2024

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“A double-edged sword”: A brief history of genomic data governance and genetic researcher perspectives on data sharing

Journal of Law, Medicine & Ethics

Kayte Spector-Bagdady, Kerry A. Ryan, Amy L. McGuire, Chris D. Krenz, M. Grace Trinidad, Kaitlyn Jaffe, Amanda Greene, J. Denard Thomas, Madison Kent, Stephanie Morain, David Wilborn, J. Scott Roberts

2024

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The prospect of artificial intelligence-supported ethics review

Ethics & Human Research

Philip J. Nickel

2024

Publication

Public perspectives on consent for and governance of biobanking in Japan

Journal of Empirical Research on Human Research Ethics

Masanori Oikawa, Yoshiyuki Takimoto

2024

Publication

“Ethical responsibility very often gets drowned out”: A qualitative interview study of genome scientists’ and ELSI scholars’ perspectives on the role and relevance of ELSI expertise

AJOB Empirical Bioethics

Daphne O. Martschenko, Anna Granucci, Mildred K. Cho

2024

Publication

Study of the impact of ClinGen Revisions on ACMG/AMP variant semi-automatic classification for rare diseases diagnosis

Clin Chim Acta

Ana Rius, Nicolas Aguirre, Lorenzo Erra, Franco Gino Brunello, German Biagioli, Jonathan Zaiat, Marcelo A. Marti

2024

Publication

Population-based genetic carrier screening. A consensus statement from the Spanish societies: AEGH, AEDP, ASEBIR, SEAGEN, SEF and SEGCD

European Journal of Human Genetics

Xavier Vendrell, Anna Abulí, Clara Serra, Juan José Guillén, Joaquín Rueda, Javier García-Planells, Fernando Santos-Simarro, Ramiro Quiroga, Fernando Abellán, Raluca Oancea-Ionescu, Encarna Guillén-Navarro

2024

Publication

Profiling public perception of emerging technologies: Gene editing, brain chips and exoskeletons. A data-analytics framework

Heliyon

Simona-Vasilica Oprea, Adela Bâra

2024

Publication

The European Health Data Space as a case study

Ethics & Human Research

Edward S. Dove

2024

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Co-creating the experience of consent for newborn genome sequencing: The Generation Study

Challenges of uncertainty in prenatal decision-making: Skeletal dysplasias

“A double-edged sword”: A brief history of genomic data governance and genetic researcher perspectives on data sharing

The prospect of artificial intelligence-supported ethics review

Public perspectives on consent for and governance of biobanking in Japan

“Ethical responsibility very often gets drowned out”: A qualitative interview study of genome scientists’ and ELSI scholars’ perspectives on the role and relevance of ELSI expertise

Study of the impact of ClinGen Revisions on ACMG/AMP variant semi-automatic classification for rare diseases diagnosis

Population-based genetic carrier screening. A consensus statement from the Spanish societies: AEGH, AEDP, ASEBIR, SEAGEN, SEF and SEGCD

Profiling public perception of emerging technologies: Gene editing, brain chips and exoskeletons. A data-analytics framework

The European Health Data Space as a case study

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