Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members

Automating Justice: An Ethical Responsibility of Computational Bioethics

(2022) Vasiliki Rahimzadeh et al.   AMERICAN JOURNAL OF BIOETHICS

Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management

(2022) Vasiliki Rahimzadeh et al.   Biopreservation and Biobanking

“Extremely slow and capricious”: A qualitative exploration of genetic researcher priorities in selecting shared data resources

(2022) M. Grace Trinidad et al.   GENETICS IN MEDICINE

The broken promise that undermines human genome research

(2021) Kendall Powell   NATURE

What can data trusts for health research learn from participatory governance in biobanks?

(2021) Richard Milne et al.   JOURNAL OF MEDICAL ETHICS

The European Genome-phenome Archive in 2021

(2021) Mallory Ann Freeberg et al.   NUCLEIC ACIDS RESEARCH

Data Access Committees

(2020) Phaik Yeong Cheah et al.   BMC Medical Ethics

Responsible, practical genomic data sharing that accelerates research

(2020) James Brian Byrd et al.   NATURE REVIEWS GENETICS

Registered access: authorizing data access

(2018) Stephanie O. M. Dyke et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

Blockchain-based platforms for genomic data sharing: a de-centralized approach in response to the governance problems?

(2018) Mahsa Shabani   JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION

“You want the right amount of oversight”: interviews with data access committee members and experts on genomic data access

(2016) Mahsa Shabani et al.   GENETICS IN MEDICINE

From the principles of genomic data sharing to the practices of data access committees

(2015) M. Shabani et al.   EMBO Molecular Medicine