Cited by 240Ethics in Clinical ResearchResearch Data Management PracticesEthics and bioethics in healthcare

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The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

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Kaye, Jane·2012·Annual Review of Genomics and Human Genetics

DOI 10.1146/annurev-genom-082410-101454PMC PMC4337968

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Abstract

Next-generation sequencing and global data sharing challenge many of the governance mechanisms currently in place to protect the privacy of research participants. These challenges will make it more difficult to guarantee anonymity for participants, provide information to satisfy the requirements of informed consent, and ensure complete withdrawal from research when requested. To move forward, we need to improve the current governance systems for research so that they are responsive to individual privacy concerns but can also be effective at a global level. We need to develop a system of e-governance that can complement existing governance systems but that places greater reliance on the use of technology to ensure compliance with ethical and legal requirements. These new governance structures must be able to address the concerns of research participants while at the same time ensuring effective data sharing that promotes public trust in genomics research.

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World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects
Cook, R. J., Dickens, B. M., & Fathalla, M. F. (2003) · Oxford University Press eBooks · doi:10.1093/acprof:oso/9780199241323.003.0025 · Cited by 10,825
Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls
The Wellcome Trust Case Control Consortium, Management Committee, Burton, P. R., Clayton, D. G., Cardon, L. R., Craddock, N., Deloukas, P., Duncanson, A., Kwiatkowski, D. P., McCarthy, M. I., et al. (2007) · Nature · doi:10.1038/nature05911 · Cited by 9,442
The Human Genome Project: Lessons from Large-Scale Biology
Collins, F. S., Morgan, M., & Patrinos, A. (2003) · Science · doi:10.1126/science.1084564 · Cited by 1,284
Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays
Homer, N., Szelinger, S., Redman, M., Duggan, D., Tembe, W., Muehling, J., Pearson, J. V., Stephan, D. A., Nelson, S. F., & Craig, D. W. (2008) · PLoS Genetics · doi:10.1371/journal.pgen.1000167 · Cited by 1,221
A decade’s perspective on DNA sequencing technology
Mardis, E. R. (2011) · Nature · doi:10.1038/nature09796 · Cited by 965
STrengthening the REporting of Genetic Association Studies (STREGA)— An Extension of the STROBE Statement
Little, J., Higgins, J. P. T., Ioannidis, J. P. A., Moher, D., Gagnon, F., von Elm, E., Khoury, M. J., Cohen, B., Davey-Smith, G., Grimshaw, J., et al. (2009) · PLoS Medicine · doi:10.1371/journal.pmed.1000022 · Cited by 811
Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations
Wolf, S. M., Lawrenz, F. P., Nelson, C. A., Kahn, J. P., Cho, M. K., Clayton, E. W., Fletcher, J. G., Georgieff, M., Hammerschmidt, D. E., Hudson, K., et al. (2008) · The Journal of Law Medicine & Ethics · doi:10.1111/j.1748-720x.2008.00266.x · Cited by 710
The eMERGE Network: A consortium of biorepositories linked to electronic medical records data for conducting genomic studies
the eMERGE Team, McCarty, C. A., Chisholm, R. L., Chute, C. G., Kullo, I. J., Jarvik, G. P., Larson, E. B., Li, R., Masys, D. R., Ritchie, M. D., et al. (2011) · BMC Medical Genomics · doi:10.1186/1755-8794-4-13 · Cited by 701
Assessment of cumulative evidence on genetic associations: interim guidelines
Ioannidis, J. P. A., Boffetta, P., Little, J., O'Brien, T. R., Uitterlinden, A. G., Vineis, P., Balding, D. J., Chokkalingam, A. P., Dolan, S. M., Flanders, W. D., et al. (2007) · International Journal of Epidemiology · doi:10.1093/ije/dym159 · Cited by 554
The Human Genome Project: Past, Present, and Future
Watson, J. D. (1990) · Science · doi:10.1126/science.2181665 · Cited by 537

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Aleixandre‐Benavent, R., Vidal‐Infer, A., Alonso‐Arroyo, A., Valderrama‐Zurián, J. C., Cañigral, F. B., & Ferrer-Sapena, A. (2014) · International Journal of Drug Policy · doi:10.1016/j.drugpo.2014.07.007 · Cited by 10
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Ethical Considerations for Disseminating Research Findings on Gender-Based Violence, Armed Conflict, and Mental Health: A Case Study from Rural Uganda.
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Lehmann, B., Bräuninger, L., Cho, Y., Falck, F., Jayadeva, S., Katell, M. A., Nguyen, T., Perini, A., Tallman, S., Mackintosh, M. E., et al. (2025) · Nature Reviews Genetics · doi:10.1038/s41576-025-00839-w · Cited by 7
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Private Shotgun DNA Sequencing
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Authors: Kaye, J.
Affiliations: University of Oxford (GB)
Corresponding author: Kaye, Jane
ORCID: Kaye, Jane
Venue: Annual Review of Genomics and Human Genetics
Publisher: Annual Reviews
Published: 2012-09-22
Volume: 13
Issue: 1
Pages: 415-431
ISSN: 1527-8204 (ISSN-L)
1545-293X
DOI: 10.1146/annurev-genom-082410-101454
PMC: PMC4337968
OpenAlex: W2156908711
Cited by: 240
References: 79
Citations by year: 2026: 5 · 2025: 17 · 2024: 12 · 2023: 16 · 2022: 4 · 2021: 20 · 2020: 18 · 2019: 16 · 2018: 21 · 2017: 22 · 2016: 35 · 2015: 22 · 2014: 19 · 2013: 11 · 2012: 2
FWCI: 1.55
Type: journal article
Language: en
Open access: green
www.ncbi.nlm.nih.gov
Locations: Annual Review of Genomics and Human Genetics (publishedVersion)
PubMed (publishedVersion)
Europe PMC (PubMed Central) (acceptedVersion)
PubMed Central (acceptedVersion)
Funders: Wellcome Trust (096599/2/11/Z, 096599)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
Keywords: data sharing, privacy preservation, genomics, research participant privacy, anonymity, informed consent, withdrawal from research, research governance, digital governance, next-generation sequencing, public trust
MeSH terms: Humans, Informed Consent, International Cooperation, Tissue Banks, Genome, Human, Ethics Committees, Sequence Analysis, DNA, Genomics, Ethical Review, Genetic Privacy, Information Dissemination

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The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

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