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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 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]
In the citing paper
“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]
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“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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Metadata
- 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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