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Public interest in health data research: laying out the conceptual groundwork

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Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore

Lysaght, T., Ballantyne, A., Toh, H. J., Lau, A. W. T., Ong, S. A. K., Schaefer, G. O., Shiraishi, M., van den Boom, W., Xafis, V., & Tai, E. S. (2021) · Journal of Personalized Medicine · doi:10.3390/jpm11090921 · Cited by 30

Moral Duties of Genomics Researchers: Why Personalized Medicine Requires a Collective Approach

Vos, S., van Delden, J. J. M., van Diest, P. J., & Bredenoord, A. L. (2016) · Trends in Genetics · doi:10.1016/j.tig.2016.11.006 · Cited by 32

Reading the fine print when buying your genetic self online: direct-to-consumer genetic testing terms and conditions

Phillips, A. M. (2017) · New Genetics and Society · doi:10.1080/14636778.2017.1352468 · Cited by 29

The Ethics and Politics of Infrastructures: Creating the Conditions of Possibility for Big Data in Medicine

Hogle, L. F. (2016) · Law, governance and technology series · doi:10.1007/978-3-319-33525-4_17 · Cited by 28

Impossible, unknowable, accountable: Dramas and dilemmas of data law

Cool, A. (2019) · Social Studies of Science · doi:10.1177/0306312719846557 · Cited by 28

Dynamic consent, communication and return of results in large-scale health data reuse: Survey of public preferences

Muller, S. H. A., van Thiel, G. J. M. W., Mostert, M., & van Delden, J. J. M. (2023) · Digital Health · doi:10.1177/20552076231190997 · Cited by 27

Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research

de Freitas, C., Amorim, M., Machado, H., Teles, E. L., Baptista, M. J., Renedo, A., Provoost, V., & Silva, S. (2021) · BMJ Open · doi:10.1136/bmjopen-2020-044289 · Cited by 27

Identifying the challenges in implementing open science

Ali‐Khan, S. E., Jean, A., & Gold, E. R. (2018) · MNI Open Research · doi:10.12688/mniopenres.12805.1 · Cited by 27

Model consent clauses for rare disease research

on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force, Nguyen, M. T., Goldblatt, J., Isasi, R. M., Jagut, M., Jonker, A. H., Kaufmann, P., Ouillade, L., Molnar-Gabor, F., Shabani, M., et al. (2019) · BMC Medical Ethics · doi:10.1186/s12910-019-0390-x · Cited by 27

Systemic lupus in the era of machine learning medicine

Zhan, K., Buhler, K. A., Chen, I. Y., Fritzler, M. J., & Choi, M. Y. (2024) · Lupus Science & Medicine · doi:10.1136/lupus-2023-001140 · Cited by 30

Exempting Health Research from the Consent Provisions of POPIA

Thaldar, D. W., & Townsend, B. (2021) · Potchefstroom Electronic Law Journal/Potchefstroomse Elektroniese Regsblad · doi:10.17159/1727-3781/2021/v24i0a10420 · Cited by 26

Differentially private false discovery rate control

Dwork, C., Su, W., & Zhang, L. (2021) · Journal of Privacy and Confidentiality · doi:10.29012/jpc.755 · Cited by 34

Rare diseases and now rare data?

Mascalzoni, D., Knoppers, B. M., Aymé, S., Macilotti, M., Dawkins, H. J. S., Woods, S., & HANSSON, M. G. (2013) · Nature Reviews Genetics · doi:10.1038/nrg3494 · Cited by 25

Ethical Issues in Contemporary Clinical Genetics

Braverman, G., Shapiro, Z. E., & Bernstein, J. A. (2018) · Mayo Clinic Proceedings Innovations Quality & Outcomes · doi:10.1016/j.mayocpiqo.2018.03.005 · Cited by 25

Protecting Personal Data in Epidemiological Research: DataSHIELD and UK Law

Wallace, S. E., Gaye, A., Shoush, O., & Burton, P. R. (2014) · Public Health Genomics · doi:10.1159/000360255 · Cited by 24

Next-generation sequencing applied to rare diseases genomics

Danielsson, K., Mun, L. J., Lordemann, A., Mao, J., & Lin, C.-H. J. (2014) · Expert Review of Molecular Diagnostics · doi:10.1586/14737159.2014.904749 · Cited by 24

Ethical Challenges in Genomic Data Sharing and Patient Privacy in Precision Medicine

Harith, D., Bhola, R. K., Dudhia, S. H., Xu, X., Bhalla, A., & Thiyagarajan, S. (2025) · Genetics and Molecular Research · doi:10.4238/v6416697

Emerging technologies towards enhancing privacy in genomic data sharing

Berger, B., & Cho, H. (2019) · Genome biology · doi:10.1186/s13059-019-1741-0 · Cited by 76

Privacy and protection in the genomic era

(2013) · Nature Medicine · doi:10.1038/nm.3342 · Cited by 3

Assessing the Privacy Risks of Data Sharing in Genomics

Heeney, C., Hawkins, N., de Vries, J., Boddington, P., & Kaye, J. S. (2010) · Public Health Genomics · doi:10.1159/000294150 · Cited by 125

Genomic research and wide data sharing: Views of prospective participants

Trinidad, S. B., Fullerton, S. M., Bares, J. M., Jarvik, G. P., Larson, E. B., & Burke, W. (2010) · Genetics in Medicine · doi:10.1097/gim.0b013e3181e38f9e · Cited by 210