Advanced search
1 file | 1.43 MB Add to list

Research ethics review for the use of anonymized samples and data : a systematic review of normative documents

Author
Organization
Abstract
While the anonymization of biological samples and data may help protect participant privacy, there is still debate over whether this alone is a sufficient safeguard to ensure the ethical conduct of research. The purpose of this systematic review is to examine whether the review of an ethics committee is necessary in the context of anonymized research, and what the considerations in said ethics review would be. The review of normative documents issued by both national and international level organizations reveals a growing concern over the ability of anonymization procedures to prevent against reidentification. This is particularly true in the context of genomic research where genetic material's uniquely identifying nature along with advances in technology have complicated previous standards of identifiability. Even where individual identities may not be identifiable, there is the risk of group harm that may not be protected by anonymization alone. We conclude that the majority of normative documents support that the review of an ethics committee is necessary to address the concerns associated with the use of anonymized samples and data for research.
Keywords
Ethics review, normative documents, research ethics, systematic review, BIOSPECIMENS, CONSENT

Downloads

  • (...).pdf
    • full text
    • |
    • UGent only
    • |
    • PDF
    • |
    • 1.43 MB

Citation

Please use this url to cite or link to this publication:

MLA
Phillips, Amicia, et al. “Research Ethics Review for the Use of Anonymized Samples and Data : A Systematic Review of Normative Documents.” ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE, vol. 24, no. 8, 2017, pp. 483–96, doi:10.1080/08989621.2017.1396896.
APA
Phillips, A., Borry, P., & Shabani, M. (2017). Research ethics review for the use of anonymized samples and data : a systematic review of normative documents. ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE, 24(8), 483–496. https://doi.org/10.1080/08989621.2017.1396896
Chicago author-date
Phillips, Amicia, Pascal Borry, and Mahsa Shabani. 2017. “Research Ethics Review for the Use of Anonymized Samples and Data : A Systematic Review of Normative Documents.” ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE 24 (8): 483–96. https://doi.org/10.1080/08989621.2017.1396896.
Chicago author-date (all authors)
Phillips, Amicia, Pascal Borry, and Mahsa Shabani. 2017. “Research Ethics Review for the Use of Anonymized Samples and Data : A Systematic Review of Normative Documents.” ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE 24 (8): 483–496. doi:10.1080/08989621.2017.1396896.
Vancouver
1.
Phillips A, Borry P, Shabani M. Research ethics review for the use of anonymized samples and data : a systematic review of normative documents. ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE. 2017;24(8):483–96.
IEEE
[1]
A. Phillips, P. Borry, and M. Shabani, “Research ethics review for the use of anonymized samples and data : a systematic review of normative documents,” ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE, vol. 24, no. 8, pp. 483–496, 2017.
@article{8630038,
  abstract     = {{While the anonymization of biological samples and data may help protect participant privacy, there is still debate over whether this alone is a sufficient safeguard to ensure the ethical conduct of research. The purpose of this systematic review is to examine whether the review of an ethics committee is necessary in the context of anonymized research, and what the considerations in said ethics review would be. The review of normative documents issued by both national and international level organizations reveals a growing concern over the ability of anonymization procedures to prevent against reidentification. This is particularly true in the context of genomic research where genetic material's uniquely identifying nature along with advances in technology have complicated previous standards of identifiability. Even where individual identities may not be identifiable, there is the risk of group harm that may not be protected by anonymization alone. We conclude that the majority of normative documents support that the review of an ethics committee is necessary to address the concerns associated with the use of anonymized samples and data for research.}},
  author       = {{Phillips, Amicia and Borry, Pascal and Shabani, Mahsa}},
  issn         = {{0898-9621}},
  journal      = {{ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE}},
  keywords     = {{Ethics review,normative documents,research ethics,systematic review,BIOSPECIMENS,CONSENT}},
  language     = {{eng}},
  number       = {{8}},
  pages        = {{483--496}},
  title        = {{Research ethics review for the use of anonymized samples and data : a systematic review of normative documents}},
  url          = {{http://doi.org/10.1080/08989621.2017.1396896}},
  volume       = {{24}},
  year         = {{2017}},
}

Altmetric
View in Altmetric
Web of Science
Times cited: