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From patients to partners: participant-centric initiatives in biomedical research.
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Consent and research governance in biobanks: evidence from focus groups with medical researchers.
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3
Ethics of social media research: common concerns and practical considerations.
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Genes, cells, and biobanks: Yes, there's still a consent problem.
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Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.
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6
Reconsidering the value of consent in biobank research.
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Ethical issues when using social media for health outside professional relationships.
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Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.
AJOB Empir Bioeth. 2018 Jul-Sep;9(3):128-142. doi: 10.1080/23294515.2018.1505783. Epub 2018 Sep 21.

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Enabling secure and self determined health data sharing and consent management.
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Data protection legislation in Africa and pathways for enhancing compliance in big data health research.
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Distributed management of patient data-sharing informed consents for clinical research.
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Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants.
Front Med (Lausanne). 2024 Jul 17;11:1408600. doi: 10.3389/fmed.2024.1408600. eCollection 2024.
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Risk mapping for better governance in biobanking: the case of biobank.cy.
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Who owns (or controls) health data?
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Toward Community-Based Natural Language Processing (CBNLP): Cocreating With Communities.
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本文引用的文献

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The tension between data sharing and the protection of privacy in genomics research.
Annu Rev Genomics Hum Genet. 2012;13:415-31. doi: 10.1146/annurev-genom-082410-101454. Epub 2012 Mar 9.
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From single biobanks to international networks: developing e-governance.
Hum Genet. 2011 Sep;130(3):377-82. doi: 10.1007/s00439-011-1063-0. Epub 2011 Jul 23.
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Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease.
PLoS Genet. 2011 Jun;7(6):e1002141. doi: 10.1371/journal.pgen.1002141. Epub 2011 Jun 23.
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Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm.
Nat Biotechnol. 2011 May;29(5):411-4. doi: 10.1038/nbt.1837. Epub 2011 Apr 24.
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Electronic consent channels: preserving patient privacy without handcuffing researchers.
Sci Transl Med. 2011 Feb 9;3(69):69cm4. doi: 10.1126/scitranslmed.3002037.
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Power to the people: participant ownership of clinical trial data.
Sci Transl Med. 2011 Feb 9;3(69):69cm3. doi: 10.1126/scitranslmed.3001857.
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Web-based, participant-driven studies yield novel genetic associations for common traits.
PLoS Genet. 2010 Jun 24;6(6):e1000993. doi: 10.1371/journal.pgen.1000993.
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Genomic research and wide data sharing: views of prospective participants.
Genet Med. 2010 Aug;12(8):486-95. doi: 10.1097/GIM.0b013e3181e38f9e.
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Patients providing the answers: narrowing the gap in data quality for emergency care.
Qual Saf Health Care. 2010 Oct;19(5):e34. doi: 10.1136/qshc.2009.032540. Epub 2010 May 27.

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