The tension between data sharing and the protection of privacy in genomics research
Open accessAbstract
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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Data privacy is an important concern for genomic data.
“Data privacy is an important concern when it comes to genomic data.19,20”
From CLASTR: The Cellosaurus STR similarity search tool ‐ A precious help for cell line authentication (2020) · cites this paper as [20]
De-identification mechanisms may make it very difficult to trace and remove individual derived data to allow participants to withdraw completely and be forgotten.
“For instance, the advancements towards privacy-enabled networks and infrastructures puzzles some academics [75] who afraid that the same mechanisms have been put in place to protect the privacy of data (like de-identification) may actually make it very difficult to trace and remove individual derived data in order to allow participants to withdraw completely their consent and be forgotten.”
From Forgetting personal data and revoking consent under the GDPR: Challenges and proposed solutions (2018) · cites this paper as [75]
In some situations, it may be only possible to prohibit the entry of new information and samples into the system rather than fully withdraw.
“In such situations, as Kaye [75] underscores, it may be only possible to prohibit the entry of new information and samples into the system.”
From Forgetting personal data and revoking consent under the GDPR: Challenges and proposed solutions (2018) · cites this paper as [75]
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Cook, R. J., Dickens, B. M., & Fathalla, M. F. (2003) · Oxford University Press eBooks · doi:10.1093/acprof:oso/9780199241323.003.0025 · Cited by 10,813 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
A decade’s perspective on DNA sequencing technology
Mardis, E. R. (2011) · Nature · doi:10.1038/nature09796 · Cited by 913 · see citing works
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 · see citing works
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 · see citing works
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 692 · see citing works
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 549 · see citing works
The Human Genome Project: Past, Present, and Future
Watson, J. D. (1990) · Science · doi:10.1126/science.2181665 · Cited by 537 · see citing works
Bioinformatics challenges of new sequencing technology
Pop, M., & Salzberg, S. L. (2008) · Trends in Genetics · doi:10.1016/j.tig.2007.12.006 · Cited by 515 · see citing works
From genetic privacy to open consent
Lunshof, J. E., CHADWICK, R. F., Vorhaus, D. B., & Church, G. M. (2008) · Nature Reviews Genetics · doi:10.1038/nrg2360 · Cited by 479 · see citing works
What makes a good genetic association study?
Hattersley, A. T., & McCarthy, M. I. (2005) · The Lancet · doi:10.1016/s0140-6736(05)67531-9 · Cited by 465 · see citing works
A Mouse Model for the Metabolic Effects of the Human Fat Mass and Obesity Associated FTO Gene
Church, C., Lee, S., Bagg, E. A. L., McTaggart, J. S., Deacon, R. M. J., Gerken, T., Lee, A., Moir, L., Mecinović, J., Quwailid, M. M., et al. (2009) · PLoS Genetics · doi:10.1371/journal.pgen.1000599 · Cited by 325 · see citing works
Manolio, T. A., Rodriguez, L. L., Brooks, L., Guttmacher, A. E., Harris, E. L., Collins, F. S., Abecasis, G. R., Ballinger, D. G., Frazer, K. A., Daly, M. J., et al. (2007) · Nature Genetics · doi:10.1038/ng2127 · Cited by 316 · see citing works
OECD Principles and Guidelines for Access to Research Data from Public Funding
Pilat, D., & Fukasaku, Y. (2007) · Data Science Journal · doi:10.2481/dsj.6.od4 · Cited by 301 · see citing works
Data sharing in genomics — re-shaping scientific practice
Kaye, J. S., Heeney, C., Hawkins, N., de Vries, J., & Boddington, P. (2009) · Nature Reviews Genetics · doi:10.1038/nrg2573 · Cited by 294 · see citing works
Self-citationFrom patients to partners: participant-centric initiatives in biomedical research
Kaye, J., Curren, L., Anderson, N., Edwards, K., Fullerton, S. M., Kanellopoulou, N., Lund, D., MacArthur, D. G., Mascalzoni, D., Shepherd, J., et al. (2012) · Nature Reviews Genetics · doi:10.1038/nrg3218 · Cited by 293 · see citing works
Self-citationInformed Consent for Population-Based Research Involving Genetics
Beskow, L. M. (2001) · JAMA · doi:10.1001/jama.286.18.2315 · Cited by 275 · see citing works
Authors, T. I. D. R. W. (2009) · Nature · doi:10.1038/461168a · Cited by 269 · see citing works
Research ethics and the challenge of whole-genome sequencing
McGuire, A. L., Caulfield, T., & Cho, M. K. (2007) · Nature Reviews Genetics · doi:10.1038/nrg2302 · Cited by 267 · see citing works
Burton, P. R., Hansell, A., Fortier, I., Manolio, T. A., Khoury, M. J., Little, J., & Elliott, P. (2008) · International Journal of Epidemiology · doi:10.1093/ije/dyn147 · Cited by 258 · see citing works
The social and ethical issues of post-genomic human biobanks
Cambon‐Thomsen, A. (2004) · Nature Reviews Genetics · doi:10.1038/nrg1473 · Cited by 242 · see citing works
Who Shares? Who Doesn't? Factors Associated with Openly Archiving Raw Research Data
Piwowar, H. (2011) · PLoS ONE · doi:10.1371/journal.pone.0018657 · Cited by 213 · see citing works
The Immortal Life of Henrietta Lacks
Hoda, S. A. (2010) · Advances in Anatomic Pathology · doi:10.1097/pap.0b013e3181f89591 · Cited by 211 · see citing works
The Charitable Trust as a Model for Genomic Biobanks
Winickoff, D. E., & Winickoff, R. N. (2003) · New England Journal of Medicine · doi:10.1056/nejmsb030036 · Cited by 167 · see citing works
Coding and Consent: Moral Challenges of the Database Project in Iceland
Árnason, V. (2004) · Bioethics · doi:10.1111/j.1467-8519.2004.00377.x · Cited by 160 · see citing works
From consent to institutions: Designing adaptive governance for genomic biobanks
O’Doherty, K. C., Burgess, M., Edwards, K., Gallagher, R. P., Hawkins, A. K., Kaye, J. S., McCaffrey, V., & Winickoff, D. E. (2011) · Social Science & Medicine · doi:10.1016/j.socscimed.2011.05.046 · Cited by 156 · see citing works
Self-citationTabor, H., Berkman, B. E., Hull, S., & Bamshad, M. (2011) · American Journal of Medical Genetics. Part A · doi:10.1002/ajmg.a.34357 · Cited by 148 · see citing works
Glad You Asked: Participants' Opinions of Re-Consent for DbGap Data Submission
Ludman, E. J., Fullerton, S. M., Spangler, L., Trinidad, S. B., Fujii, M., Jarvik, G. P., Larson, E. B., & Burke, W. (2010) · Journal of Empirical Research on Human Research Ethics · doi:10.1525/jer.2010.5.3.9 · Cited by 144 · see citing works
Ethical, Legal, and Social Implications of Biobanks for Genetics Research
Haga, S. B., & Beskow, L. M. (2008) · Advances in genetics · doi:10.1016/s0065-2660(07)00418-x · Cited by 140 · see citing works
Corrigan, O. (2004) · Routledge eBooks · doi:10.4324/9780203577929 · Cited by 139 · see citing works
On Jim Watson's APOE status: genetic information is hard to hide
Nyholt, D. R., Yu, C., & Visscher, P. M. (2008) · European Journal of Human Genetics · doi:10.1038/ejhg.2008.198 · Cited by 139 · see citing works
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 · see citing works
Self-citationGenomics, Health Care, and Society
Hudson, K. (2011) · New England Journal of Medicine · doi:10.1056/nejmra1010517 · Cited by 124 · see citing works
Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas
Caulfield, T., & Kaye, J. S. (2009) · Medical Law International · doi:10.1177/096853320901000201 · Cited by 118 · see citing works
Self-citationBeyond Consent: Seeking Justice in Research
Kahn, J. P., Mastroianni, A. C., & Sugarman, J. (2018) · Cited by 117 · see citing works
From single biobanks to international networks: developing e-governance
Kaye, J. S. (2011) · Human Genetics · doi:10.1007/s00439-011-1063-0 · Cited by 114 · see citing works
Self-citationMalin, B., Karp, D. R., & Scheuermann, R. H. (2010) · Journal of Investigative Medicine · doi:10.2310/jim.0b013e3181c9b2ea · Cited by 114 · see citing works
An investigation of patients’ motivations for their participation in genetics-related research
Hallowell, N., Cooke, S. C. S., Crawford, G., Lucassen, A., Parker, M. J., & Snowdon, C. (2009) · Journal of Medical Ethics · doi:10.1136/jme.2009.029264 · Cited by 112 · see citing works
Health-Information Altruists — A Potentially Critical Resource
Kohane, I. S., & Altman, R. B. (2005) · New England Journal of Medicine · doi:10.1056/nejmsb051220 · Cited by 110 · see citing works
DNA data sharing: research participants' perspectives
McGuire, A. L., Hamilton, J. A., Lunstroth, R., McCullough, L. B., & Goldman, A. M. (2008) · Genetics in Medicine · doi:10.1097/gim.0b013e31815f1e00 · Cited by 104 · see citing works
Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection
Church, G. M., Heeney, C., Hawkins, N., de Vries, J., Boddington, P., Kaye, J. S., Bobrow, M., & Weir, B. S. (2009) · PLoS Genetics · doi:10.1371/journal.pgen.1000665 · Cited by 92 · see citing works
Self-citationResearch Practice and Participant Preferences: The Growing Gulf
Trinidad, S. B., Fullerton, S. M., Ludman, E. J., Jarvik, G. P., Larson, E. B., & Burke, W. (2011) · Science · doi:10.1126/science.1199000 · Cited by 87 · see citing works
Dalton, R. (2004) · Nature · doi:10.1038/430500a · Cited by 83 · see citing works
Gift Relationships in Genetics Research
Tutton, R. (2002) · Science as Culture · doi:10.1080/0950543022000028965 · Cited by 83 · see citing works
Rodriguez, H., Snyder, M., Uhlén, M., Andrews, P., Beavis, R. C., Borchers, C. H., Chalkley, R. J., Cho, S. Y., Cottingham, K., Dunn, M. J., et al. (2009) · Journal of Proteome Research · doi:10.1021/pr900023z · Cited by 83 · see citing works
GENETIC DATABASES: SOCIO-ETHICAL ISSUES IN THE COLLECTION AND USE OF DNA
Nõmper, A. (2004) · SCRIPTed A Journal of Law Technology & Society · doi:10.2966/scrip.010304.510 · Cited by 81 · see citing works
McGuire, A. L., Basford, M., Dressler, L. G., Fullerton, S. M., Koenig, B. A., Li, R., McCarty, C. A., Ramos, E., Smith, M. E., Somkin, C. P., et al. (2011) · Genome Research · doi:10.1101/gr.120329.111 · Cited by 76 · see citing works
Genomics and Privacy: Implications of the New Reality of Closed Data for the Field
Greenbaum, D. S., Sboner, A., Mu, X. J., & Gerstein, M. (2011) · PLoS Computational Biology · doi:10.1371/journal.pcbi.1002278 · Cited by 76 · see citing works
Data sharing: not as simple as it seems
Pearce, N., & Smith, A. H. (2011) · Environmental Health · doi:10.1186/1476-069x-10-107 · Cited by 63 · see citing works
Human genomes, public and private
(2001) · Nature · doi:10.1038/35057454 · Cited by 61 · see citing works
Gitschier, J. (2009) · The American Journal of Human Genetics · doi:10.1016/j.ajhg.2009.01.018 · Cited by 57 · see citing works
Principles and Practice in Biobank Governance
Laurie, G. T., Hunt, A., & Richards, M. G. (2009) · Ashgate Publishing eBooks · Cited by 56 · see citing works
Genomic Research and Incidental Findings
Ness, B. V. (2008) · The Journal of Law Medicine & Ethics · doi:10.1111/j.1748-720x.2008.00272.x · Cited by 52 · see citing works
Partnership in U.K. Biobank: A Third Way for Genomic Property?
Winickoff, D. E. (2007) · The Journal of Law Medicine & Ethics · doi:10.1111/j.1748-720x.2007.00166.x · Cited by 44 · see citing works
Human genome at ten: Science after the sequence
Butler, D. (2010) · Nature · doi:10.1038/4651000a · Cited by 44 · see citing works
(1998) · doi:10.1093/oso/9780195113532.001.0001 · Cited by 44 · see citing works
Principles and Practice in Biobank Governance
Stranger, M. (2016) · Routledge eBooks · doi:10.4324/9781315602158 · Cited by 43 · see citing works
Sample, Data Use and Protection in Biobanking in Europe: Legal Issues
Zika, E., den Bäumen, T. S. I., Kaye, J. S., Brand, A. M., & Ibarreta, D. (2008) · Pharmacogenomics · doi:10.2217/14622416.9.6.773 · Cited by 42 · see citing works
Self-citationLaurie, G. T., Mallia, P., Frenkel, D. A., Krajewska, A., Moniz, H., Nordal, S., Pitz, C., & Sandor, J. M. (2010) · Medical Law International · doi:10.1177/096853321001000404 · Cited by 40 · see citing works
Potential for Revealing Individual-Level Information in Genome-wide Association Studies
Lumley, T. (2010) · JAMA · doi:10.1001/jama.2010.120 · Cited by 38 · see citing works
Governing Biobanks : Understanding the Interplay between Law and Practice
Austin, L., & Lemmens, T. (2012) · Hart Publishing eBooks · doi:10.5040/9781472565846 · Cited by 36 · see citing works
Untapped Potential: IRB Guidance for the Ethical Research Use of Stored Biological Materials
Wolf, L. E., & Lo, B. (2004) · IRB Ethics and Human Research · doi:10.2307/3563696 · Cited by 35 · see citing works
Gibbs, R. A. (2005) · Nature · doi:10.1038/4371233a · Cited by 32 · see citing works
Knoppers, B. M., & Joly, Y. (2007) · Trends in biotechnology · doi:10.1016/j.tibtech.2007.04.006 · Cited by 30 · see citing works
Withdrawing from Research: A Rethink in the Context of Research Biobanks
Holm, S. (2011) · Health Care Analysis · doi:10.1007/s10728-011-0194-8 · Cited by 29 · see citing works
Governing biobanks: understanding the interplay between law and practice
Kaye, J. S. (2012) · Hart eBooks · Cited by 24 · see citing works
Self-citationGenomics, Health Care, and Society
Hudson, K. (2012) · Obstetrical & Gynecological Survey · doi:10.1097/ogx.0b013e3182439ec9 · Cited by 24 · see citing works
Blood donation for genetic research: what can we learn from donors’ narratives?
Busby, H. (2004) · DigitalGeorgetown (Georgetown University Library) · doi:10.4324/9780203577929-8 · Cited by 24 · see citing works
Anderson, N., & Edwards, K. (2010) · doi:10.1145/1920320.1920323 · Cited by 21 · see citing works
Biobanken und Biomolekulare Ressourcen Forschungsinfrastruktur (BBMRI)
Viertler, C., & Zatloukal, K. (2008) · Der Pathologe · doi:10.1007/s00292-008-1048-5 · Cited by 21 · see citing works
The Challenges of Achieving Open Source Sharing of Biobank Data
Gitter, D. M. (2010) · Biotechnology Law Report · doi:10.1089/blr.2010.9909 · Cited by 21 · see citing works
Temporal Trends in Results Availability from Genome-Wide Association Studies
Johnson, A. D., Leslie, R., & O’Donnell, C. J. (2011) · PLoS Genetics · doi:10.1371/journal.pgen.1002269 · Cited by 18 · see citing works
Consent Forms in Genomics: The Difference between Law and Practice
Gowans, H., Kanellopoulou, N., Hawkins, N., Curren, L., Melham, K., Kaye, J. S., & Boddington, P. (2011) · European Journal of Health Law · doi:10.1163/157180911x598744 · Cited by 17 · see citing works
Self-citationWithdrawing from Participating in a Biobank — A Comparative Study
Gertz, R. (2008) · European Journal of Health Law · doi:10.1163/157180908x338269 · Cited by 13 · see citing works
Free genome databases finally defeat Celera
Marris, E. (2005) · Nature · doi:10.1038/435006a · Cited by 11 · see citing works
Mardis, E. R., & Lunshof, J. E. (2009) · Personalized Medicine · doi:10.2217/pme.09.63 · Cited by 9 · see citing works
Commentary: How small is small?
Day, N. (2008) · International Journal of Epidemiology · doi:10.1093/ije/dyn232 · Cited by 8 · see citing works
Flagged first, then by citations
Research works printed but not linked: 2
- [34]Kaye J Curren L Anderson N Edwards K Fullerton SM User-centric initiatives in health and biomedical research Nat. Rev. Genet 2012 In press PMC3806497 22473380
- Viertler C Zatloukal K Biobanking and Biomolecular Resources Research Infrastructure (BBMRI). Implications for pathology Pathologe 2008 29 Suppl. 2 210 13 18810444
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Chen, I. Y., Pierson, E., Rose, S., Joshi, S., Ferryman, K., & Ghassemi, M. (2021) · Annual Review of Biomedical Data Science · doi:10.1146/annurev-biodatasci-092820-114757 · Cited by 645 · see citing works
Paediatric genomics: diagnosing rare disease in children
Wright, C. F., FitzPatrick, D. R., & Firth, H. V. (2018) · Nature Reviews Genetics · doi:10.1038/nrg.2017.116 · Cited by 616 · see citing works
The European Genome-phenome Archive of human data consented for biomedical research
Lappalainen, I., Almeida, J. P., Kumanduri, V., Senf, A., Spalding, D., Ur-Rehman, S., Saunders, G. I., Kandasamy, J., Cáccamo, M., Leinonen, R., et al. (2015) · Nature Genetics · doi:10.1038/ng.3312 · Cited by 359 · see citing works
Rights, Interests and Expectations: Indigenous Perspectives on Unrestricted Access to Genomic Data
Hudson, M., Garrison, N. A., Sterling, R., Caron, N. R., Fox, K., Yracheta, J., Anderson, J., Wilcox, P., Arbour, L., Brown, A., et al. (2020) · Nature Reviews Genetics · doi:10.1038/s41576-020-0228-x · Cited by 320 · see citing works
Forgetting personal data and revoking consent under the GDPR: Challenges and proposed solutions
Politou, E., Alepis, E., & Patsakis, C. (2018) · Journal of Cybersecurity · doi:10.1093/cybsec/tyy001 · Cited by 313 · see citing works
From patients to partners: participant-centric initiatives in biomedical research
Kaye, J., Curren, L., Anderson, N., Edwards, K., Fullerton, S. M., Kanellopoulou, N., Lund, D., MacArthur, D. G., Mascalzoni, D., Shepherd, J., et al. (2012) · Nature Reviews Genetics · doi:10.1038/nrg3218 · Cited by 293 · see citing works
Self-citationKraft, S. A., Cho, M. K., Gillespie, K., Halley, M., Varsava, N., Ormond, K. E., Luft, H. S., Wilfond, B. S., & Lee, S. S.-J. (2018) · The American Journal of Bioethics · doi:10.1080/15265161.2018.1431322 · Cited by 271 · see citing works
Sanderson, S. C., Brothers, K. B., Mercaldo, N. D., Clayton, E. W., Antommaria, A. H. M., Aufox, S. A., Brilliant, M. H., Campos, D., Carrell, D., Connolly, J. J., et al. (2017) · The American Journal of Human Genetics · doi:10.1016/j.ajhg.2017.01.021 · Cited by 241 · see citing works
Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing
Mello, M. M., Lieou, V., & Goodman, S. N. (2018) · New England Journal of Medicine · doi:10.1056/nejmsa1713258 · Cited by 237 · see citing works
International Charter of principles for sharing bio-specimens and data
Mascalzoni, D., Dove, E. S., Rubinstein, Y., Dawkins, H. J. S., Kole, A., McCormack, P., Woods, S., Rieß, O., Schaefer, F. S., Lochmüller, H., et al. (2014) · European Journal of Human Genetics · doi:10.1038/ejhg.2014.197 · Cited by 154 · see citing works
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Caudai, C., Galizia, A., Geraci, F., Pera, L. L., Morea, V., Salerno, E., Via, A., & Colombo, T. (2021) · Computational and Structural Biotechnology Journal · doi:10.1016/j.csbj.2021.10.009 · Cited by 150 · see citing works
Mostert, M., Bredenoord, A. L., Biesaart, M. C. I. H., & van Delden, J. J. M. (2016) · European Journal of Human Genetics · doi:10.1038/ejhg.2015.239 · Cited by 143 · see citing works
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Wan, Z., Hazel, J. W., Clayton, E. W., Vorobeychik, Y., Kantarcıoğlu, M., & Malin, B. (2022) · Nature Reviews Genetics · doi:10.1038/s41576-022-00455-y · Cited by 141 · see citing works
Papoutsi, C., Reed, J. E., Marston, C., Lewis, R., Majeed, A., & Bell, D. (2015) · BMC Medical Informatics and Decision Making · doi:10.1186/s12911-015-0202-2 · Cited by 137 · see citing works
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Shabani, M., Bezuidenhout, L. M., & Borry, P. (2014) · Expert Review of Molecular Diagnostics · doi:10.1586/14737159.2014.961917 · Cited by 118 · see citing works
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Riordan, F., Papoutsi, C., Reed, J. E., Marston, C., Bell, D., & Majeed, A. (2015) · International Journal of Medical Informatics · doi:10.1016/j.ijmedinf.2015.01.008 · Cited by 98 · see citing works
Gille, F., Smith, S. C., & Mays, N. (2020) · Social Theory & Health · doi:10.1057/s41285-020-00129-x · Cited by 98 · see citing works
CLASTR: The Cellosaurus STR similarity search tool ‐ A precious help for cell line authentication
Robin, T., Capes‐Davis, A., & Bairoch, A. (2020) · International Journal of Cancer · doi:10.1002/ijc.32639 · Cited by 97 · see citing works
Neglected ethical issues in biobank management: Results from a U.S. study
Cadigan, R. J., Lassiter, D., Haldeman, K., Conlon, I., Reavely, E., & Henderson, G. E. (2013) · Life Sciences Society and Policy · doi:10.1186/2195-7819-9-1 · Cited by 93 · see citing works
If you build it, they will come: unintended future uses of organised health data collections
O’Doherty, K. C., Christofides, E., Yen, J., Bentzen, H. B., Burke, W., Hallowell, N., Koenig, B. A., & Willison, D. J. (2016) · BMC Medical Ethics · doi:10.1186/s12910-016-0137-x · Cited by 91 · see citing works
Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology
Lolkema, M. P., Hooijdonk, C. G. G., Bredenoord, A. L., Kapitein, P., Roach, N., Cuppen, E. P. J. G., Knoers, N. V. A. M., & Voest, E. E. (2013) · Journal of Clinical Oncology · doi:10.1200/jco.2012.45.2789 · Cited by 90 · see citing works
The General Data Protection Regulation
Politou, E., Alepis, E., Virvou, M. K., & Patsakis, C. (2021) · Learning and analytics in intelligent systems · doi:10.1007/978-3-030-85443-0_3 · Cited by 89 · see citing works
Facilitating a culture of responsible and effective sharing of cancer genome data
Siu, L. L., Lawler, M., Haussler, D. H., Knoppers, B. M., Lewin, J. H., Vis, D. J., Liao, R. G., André, F., Banks, I., Barrett, J. C., et al. (2016) · Nature Medicine · doi:10.1038/nm.4089 · Cited by 85 · see citing works
Milne, R., Morley, K. I., Almarri, M. A., Anwer, S., Atutornu, J., Baranova, E. E., Bevan, P., Cerezo, M., Cong, Y., Costa, A., et al. (2021) · Genome Medicine · doi:10.1186/s13073-021-00903-0 · Cited by 77 · see citing works
Are Data Sharing and Privacy Protection Mutually Exclusive?
Joly, Y., Dyke, S. O. M., Knoppers, B. M., & Pastinen, T. (2016) · Cell · doi:10.1016/j.cell.2016.11.004 · Cited by 76 · see citing works
Model framework for governance of genomic research and biobanking in Africa – a content description
Yakubu, A., Tindana, P. O., Matimba, A., Littler, K., Munung, N. S., Madden, E. B., Staunton, C., & de Vries, J. (2018) · AAS Open Research · doi:10.12688/aasopenres.12844.2 · Cited by 76 · see citing works
Laestadius, L. I., Rich, J. R., & Auer, P. L. (2016) · Genetics in Medicine · doi:10.1038/gim.2016.136 · Cited by 75 · see citing works
Quinn, P. F., & Malgieri, G. (2020) · German Law Journal · doi:10.1017/glj.2021.79 · Cited by 73 · see citing works
Ethical concerns on sharing genomic data including patients’ family members
Takashima, K., Maru, Y., Mori, S., Mano, H., Noda, T., & Muto, K. (2018) · BMC Medical Ethics · doi:10.1186/s12910-018-0310-5 · Cited by 72 · see citing works
Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country
Hoeyer, K. (2016) · Law, governance and technology series · doi:10.1007/978-3-319-33525-4_4 · Cited by 70 · see citing works
The risk of re-identification versus the need to identify individuals in rare disease research
HANSSON, M. G., Lochmüller, H., Rieß, O., Schaefer, F. S., Orth, M., Rubinstein, Y., Molster, C. M., Dawkins, H. J. S., Taruscio, D., de la Paz, M. P., et al. (2016) · European Journal of Human Genetics · doi:10.1038/ejhg.2016.52 · Cited by 69 · see citing works
Stakeholders’ perspectives on biobank-based genomic research: systematic review of the literature
Husedzinovic, A., Ose, D. J., Schickhardt, C., Fröhling, S., & Winkler, E. C. (2015) · European Journal of Human Genetics · doi:10.1038/ejhg.2015.27 · Cited by 68 · see citing works
Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework
Dove, E. S. (2015) · The Journal of Law Medicine & Ethics · doi:10.1111/jlme.12311 · Cited by 67 · see citing works
Clark, K., Duckham, M., Guillemin, M. N., Hunter, A., McVernon, J., O’Keefe, C. M., Pitkin, C., Prawer, S., Sinnott, R., Warr, D. J., et al. (2018) · Ethics and Information Technology · doi:10.1007/s10676-018-9490-4 · Cited by 66 · see citing works
Data sharing in large research consortia: experiences and recommendations from ENGAGE
Budin‐Ljøsne, I., Isaeva, J., Knoppers, B. M., Tassé, A. M., Shen, H.-Y., McCarthy, M. I., & Harris, J. R. (2013) · European Journal of Human Genetics · doi:10.1038/ejhg.2013.131 · Cited by 63 · see citing works
Building a data sharing model for global genomic research
Kosseim, P., Dove, E. S., Baggaley, C., Meslin, E. M., Cate, F. H., Kaye, J. S., Harris, J. R., & Knoppers, B. M. (2014) · Genome biology · doi:10.1186/s13059-014-0430-2 · Cited by 62 · see citing works
Self-citationGoverning Medical Knowledge Commons
Frischmann, B., Madison, M., & Strandburg, K. J. (2017) · Cambridge University Press eBooks · doi:10.1017/9781316544587 · Cited by 61 · see citing works
Research participants’ attitudes towards the confidentiality of genomic sequence information
Jamal, L., Sapp, J. C., Lewis, K. L., Yanes, T., Facio, F. M., Biesecker, L. G., & Biesecker, B. B. (2013) · European Journal of Human Genetics · doi:10.1038/ejhg.2013.276 · Cited by 60 · see citing works
Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance
Cook-Deegan, R. M., Ankeny, R. A., & Jones, K. M. (2017) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-083115-022515 · Cited by 59 · see citing works
Albalwy, F., Brass, A., & Davies, A. C. (2021) · JMIR Medical Informatics · doi:10.2196/27816 · Cited by 58 · see citing works
Evolving approaches to the ethical management of genomic data
McEwen, J. E., Boyer, J. T., & Sun, K. (2013) · Trends in Genetics · doi:10.1016/j.tig.2013.02.001 · Cited by 52 · see citing works
Beyond Our Borders? Public Resistance to Global Genomic Data Sharing
Majumder, M. A., Cook-Deegan, R. M., & McGuire, A. L. (2016) · PLoS Biology · doi:10.1371/journal.pbio.2000206 · Cited by 52 · see citing works
Motivating participation in open science by examining researcher incentives
Ali‐Khan, S. E., Harris, L. W., & Gold, E. R. (2017) · eLife · doi:10.7554/elife.29319 · Cited by 52 · see citing works
Key Implications of Data Sharing in Pediatric Genomics
Rahimzadeh, V. N., Schickhardt, C., Knoppers, B. M., Sénécal, K., Vears, D. F., Fernandez, C. V., Pfister, S. M., Plon, S. E., Terry, S. F., Williams, J. L., et al. (2018) · Archives of Pediatrics and Adolescent Medicine · doi:10.1001/jamapediatrics.2017.5500 · Cited by 51 · see citing works
APPLaUD: access for patients and participants to individual level uninterpreted genomic data
on behalf of the Participant Values Task Team of the Global Alliance for Genomics and Health, Thorogood, A., Bobe, J. R., Prainsack, B., Middleton, A., Scott, E. R., Nelson, S. C., Corpas, M., Bonhomme, N. F., Rodriguez, L. L., et al. (2018) · Human Genomics · doi:10.1186/s40246-018-0139-5 · Cited by 50 · see citing works
Participants' Recall and Understanding of Genomic Research and Large-Scale Data Sharing
Robinson, J. O., Slashinski, M. J., Wang, T., Hilsenbeck, S. G., & McGuire, A. L. (2013) · Journal of Empirical Research on Human Research Ethics · doi:10.1525/jer.2013.8.4.42 · Cited by 50 · see citing works
Genomic Big Data and Privacy: Challenges and Opportunities for Precision Medicine
Frizzo-Barker, J., Chow-White, P. A., Charters, A., & Ha, D. T. (2016) · Computer Supported Cooperative Work (CSCW) · doi:10.1007/s10606-016-9248-7 · Cited by 48 · see citing works
O'Brien, E. C., Rodríguez, A. M., Kum, H., Schanberg, L. E., Fitz-Randolph, M., O’Brien, S. M., & Setoguchi, S. (2019) · International Journal of Medical Informatics · doi:10.1016/j.ijmedinf.2019.04.003 · Cited by 48 · see citing works
International guidelines for privacy in genomic biobanking (or the unexpected virtue of pluralism)
Thorogood, A., & Zawati, M. H. (2015) · Journal of Law, Medicine & Ethics · doi:10.1111/jlme.12312 · Cited by 48 · see citing works
Hassan, L., Dalton, A., Hammond, C. L., & Tully, M. P. (2020) · Public Understanding of Science · doi:10.1177/0963662520942132 · Cited by 44 · see citing works
Perspectives on Open Science and scientific data sharing:an interdisciplinary workshop.
Destro‐Bisol, G., Anagnostou, P., Capocasa, M., Bencivelli, S., Cerroni, A., Contreras, J. L., Enke, N., Fantini, B., Greco, P., Heeney, C., et al. (2014) · PubMed · doi:10.4436/jass.92006 · Cited by 43 · see citing works
Broad Consent Is Consent for Governance
Boers, S. N., van Delden, J. J. M., & Bredenoord, A. L. (2015) · The American Journal of Bioethics · doi:10.1080/15265161.2015.1062165 · Cited by 43 · see citing works
Rosemann, A., & Zhang, X.-Q. (2021) · Intelligent Medicine · doi:10.1016/j.imed.2021.12.002 · Cited by 32 · see citing works
Ethics Policies and Ethics Work in Cross-national Genetic Research and Data Sharing
Hoeyer, K., Tupasela, A., & Rasmussen, M. B. (2016) · Science Technology & Human Values · doi:10.1177/0162243916674321 · Cited by 42 · see citing works
Identifiability and Privacy in Pluripotent Stem Cell Research
Isasi, R. M., Andrews, P. W., Baltz, J. M., Bredenoord, A. L., Burton, P., Chiu, I.-M., Hull, S. C., Jung, J.-W., Kurtz, A., Lomax, G. P., et al. (2014) · Cell stem cell · doi:10.1016/j.stem.2014.03.014 · Cited by 41 · see citing works
Geller, G., Dvoskin, R. L., Thio, C. L., Duggal, P., Lewis, M., Bailey, T. C., Sutherland, A., Salmon, D. A., & Kahn, J. P. (2014) · Genome Medicine · doi:10.1186/s13073-014-0106-2 · Cited by 40 · see citing works
Genetics of movement disorders in the next‐generation sequencing era
Olgiati, S., Quadri, M., & Bonifati, V. (2016) · Movement Disorders · doi:10.1002/mds.26521 · Cited by 40 · see citing works
Krahe, M. A., Milligan, E., & Reilly, S. (2019) · Journal of Biomedical Informatics · doi:10.1016/j.jbi.2019.103222 · Cited by 40 · see citing works
Ethics, Medicine, and Information Technology
Goodman, K. W. (2015) · Cambridge University Press eBooks · doi:10.1017/cbo9781139600330 · Cited by 40 · see citing works
Chin, J. M., Ribeiro, G., & Rairden, A. (2019) · Journal of Law and the Biosciences · doi:10.1093/jlb/lsz009 · Cited by 38 · see citing works
Rare disease research: Breaking the privacy barrier
Mascalzoni, D., Paradiso, A., & Hansson, M. (2014) · Applied & Translational Genomics · doi:10.1016/j.atg.2014.04.003 · Cited by 38 · see citing works
Lysaght, T., Ballantyne, A., Xafis, V., Ong, S. A. K., Schaefer, G. O., Ling, J., Newson, A. J., Khor, I. W., & Tai, E. S. (2020) · BMC Medical Ethics · doi:10.1186/s12910-020-00561-8 · Cited by 37 · see citing works
Samples and data accessibility in research biobanks: an explorative survey
Capocasa, M., Anagnostou, P., D’Abramo, F., Matteucci, G., Dominici, V., Destro‐Bisol, G., & Rufo, F. (2016) · PeerJ · doi:10.7717/peerj.1613 · Cited by 37 · see citing works
An exploratory study of health scientists’ data reuse behaviors
Joo, S., Kim, S., & Kim, Y. (2017) · Aslib Journal of Information Management · doi:10.1108/ajim-12-2016-0201 · Cited by 36 · see citing works
Data philanthropy and the design of the infraethics for information societies
Taddeo, M. (2016) · Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences · doi:10.1098/rsta.2016.0113 · Cited by 35 · see citing works
Chow-White, P. A., MacAulay, M., Charters, A., & Chow, P. (2015) · Ethics and Information Technology · doi:10.1007/s10676-015-9373-x · Cited by 35 · see citing works
Aleixandre‐Benavent, R., Moreno-Solano, L., Ferrer-Sapena, A., & Sánchez-Pérez, E. A. (2016) · Scientometrics · doi:10.1007/s11192-016-1868-7 · Cited by 35 · see citing works
Consent for Biobanking: The Legal Frameworks of Countries in the BioSHaRE-EU Project
Kaye, J. S., Moraia, L. B., Curren, L., Bell, J., Mitchell, C., Soini, S., Hoppe, N., Øien, M., & Rial‐Sebbag, E. (2016) · Biopreservation and Biobanking · doi:10.1089/bio.2015.0123 · Cited by 35 · see citing works
Self-citationParents’ attitudes toward consent and data sharing in biobanks: A multisite experimental survey
Antommaria, A. H. M., Brothers, K. B., Myers, J. A., Feygin, Y. B., Aufox, S. A., Brilliant, M. H., Conway, P., Fullerton, S. M., Garrison, N. A., Horowitz, C. R., et al. (2018) · AJOB Empirical Bioethics · doi:10.1080/23294515.2018.1505783 · Cited by 35 · see citing works
Challenges of web-based personal genomic data sharing
Shabani, M., & Borry, P. (2015) · Life Sciences Society and Policy · doi:10.1186/s40504-014-0022-7 · Cited by 34 · see citing works
Big genetic data and its big data protection challenges
Quinn, P. F., & Quinn, L. J. E. (2018) · Computer law & security review · doi:10.1016/j.clsr.2018.05.028 · Cited by 34 · see citing works
de Vries, J., Williams, T. N., Bojang, K., Kwiatkowski, D. P., Fitzpatrick, R. M., & Parker, M. J. (2014) · BMC Medical Ethics · doi:10.1186/1472-6939-15-62 · Cited by 33 · see citing works
Principle of proportionality in genomic data sharing
Wright, C. F., Hurles, M. E., & Firth, H. V. (2015) · Nature Reviews Genetics · doi:10.1038/nrg.2015.5 · Cited by 33 · see citing works
Seaby, E. G., & Ennis, S. (2020) · Briefings in Functional Genomics · doi:10.1093/bfgp/elaa009 · Cited by 33 · see citing works
Sariyar, M., Schlünder, I., Smee, C., & Suhr, S. B. (2015) · Biopreservation and Biobanking · doi:10.1089/bio.2015.0014 · Cited by 32 · see citing works
Limits of data anonymity: lack of public awareness risks trust in health system activities
Gille, F., & Brall, C. (2021) · Life Sciences Society and Policy · doi:10.1186/s40504-021-00115-9 · Cited by 31 · see citing works
Barazzetti, G., Bosisio, F., Koutaïssoff, D., & Spencer, B. (2020) · European Journal of Human Genetics · doi:10.1038/s41431-020-0585-0 · Cited by 30 · see citing works
Public interest in health data research: laying out the conceptual groundwork
Ballantyne, A., & Schaefer, G. O. (2020) · Journal of Medical Ethics · doi:10.1136/medethics-2020-106152 · Cited by 30 · see citing works
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 · see citing works
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 30 · see citing works
Phillips, A. M. (2017) · New Genetics and Society · doi:10.1080/14636778.2017.1352468 · Cited by 29 · see citing works
Hogle, L. F. (2016) · Law, governance and technology series · doi:10.1007/978-3-319-33525-4_17 · Cited by 28 · see citing works
Impossible, unknowable, accountable: Dramas and dilemmas of data law
Cool, A. (2019) · Social Studies of Science · doi:10.1177/0306312719846557 · Cited by 28 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 26 · see citing works
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 · see citing works
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 26 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
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 · see citing works
- 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
- 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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