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Assessing the Privacy Risks of Data Sharing in Genomics

The protection of identity of participants in medical research has traditionally been guaranteed by the maintenance of the confidentiality of health information through mechanisms such as only releasing data in an aggregated form or after identifying variables have been removed. This protection of p... Full description

Journal Title: Community genetics 2011-01-01, Vol.14 (1), p.17-25
Main Author: Heeney, C
Other Authors: Hawkins, N , de Vries, J , Boddington, P , Kaye, J
Format: Electronic Article Electronic Article
Language: English
Subjects:
Quelle: Alma/SFX Local Collection
Publisher: Basel, Switzerland: S. Karger AG
ID: ISSN: 1662-4246
Link: https://www.ncbi.nlm.nih.gov/pubmed/20339285
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recordid: cdi_proquest_miscellaneous_821595315
title: Assessing the Privacy Risks of Data Sharing in Genomics
format: Article
creator:
  • Heeney, C
  • Hawkins, N
  • de Vries, J
  • Boddington, P
  • Kaye, J
subjects:
  • Access to information
  • Confidentiality
  • Confidentiality - ethics
  • ethics
  • Genetic Predisposition to Disease
  • Genetic privacy
  • Genetic Privacy - legislation & jurisprudence
  • Genetic research
  • Genetic Research - ethics
  • Genetic Testing - ethics
  • Genome
  • Genomics
  • Genomics - ethics
  • human
  • Humans
  • Information dissemination
  • Informed consent
  • Internet
  • Original Paper
  • Risk Assessment
ispartof: Community genetics, 2011-01-01, Vol.14 (1), p.17-25
description: The protection of identity of participants in medical research has traditionally been guaranteed by the maintenance of the confidentiality of health information through mechanisms such as only releasing data in an aggregated form or after identifying variables have been removed. This protection of privacy is regarded as a fundamental principle of research ethics, through which the support of research participants and the public is maintained. Whilst this traditional model was adopted for genetics and genomics research, and was generally considered broadly fit for purpose, we argue that this approach is increasingly untenable in genomics. Privacy risk assessments need to have regard to the whole data environment, not merely the quality of the dataset to be released in isolation. As sources of data proliferate, issues of privacy protection are increasingly problematic in relation to the release of genomic data. However, we conclude that, by paying careful attention to potential pitfalls, scientific funders and researchers can take an important part in attempts to safeguard the public and ensure the continuation of potentially important scientific research.
language: eng
source: Alma/SFX Local Collection
identifier: ISSN: 1662-4246
fulltext: fulltext
issn:
  • 1662-4246
  • 1662-8063
url: Link


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descriptionThe protection of identity of participants in medical research has traditionally been guaranteed by the maintenance of the confidentiality of health information through mechanisms such as only releasing data in an aggregated form or after identifying variables have been removed. This protection of privacy is regarded as a fundamental principle of research ethics, through which the support of research participants and the public is maintained. Whilst this traditional model was adopted for genetics and genomics research, and was generally considered broadly fit for purpose, we argue that this approach is increasingly untenable in genomics. Privacy risk assessments need to have regard to the whole data environment, not merely the quality of the dataset to be released in isolation. As sources of data proliferate, issues of privacy protection are increasingly problematic in relation to the release of genomic data. However, we conclude that, by paying careful attention to potential pitfalls, scientific funders and researchers can take an important part in attempts to safeguard the public and ensure the continuation of potentially important scientific research.
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subjectAccess to information ; Confidentiality ; Confidentiality - ethics ; ethics ; Genetic Predisposition to Disease ; Genetic privacy ; Genetic Privacy - legislation & jurisprudence ; Genetic research ; Genetic Research - ethics ; Genetic Testing - ethics ; Genome ; Genomics ; Genomics - ethics ; human ; Humans ; Information dissemination ; Informed consent ; Internet ; Original Paper ; Risk Assessment
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abstractThe protection of identity of participants in medical research has traditionally been guaranteed by the maintenance of the confidentiality of health information through mechanisms such as only releasing data in an aggregated form or after identifying variables have been removed. This protection of privacy is regarded as a fundamental principle of research ethics, through which the support of research participants and the public is maintained. Whilst this traditional model was adopted for genetics and genomics research, and was generally considered broadly fit for purpose, we argue that this approach is increasingly untenable in genomics. Privacy risk assessments need to have regard to the whole data environment, not merely the quality of the dataset to be released in isolation. As sources of data proliferate, issues of privacy protection are increasingly problematic in relation to the release of genomic data. However, we conclude that, by paying careful attention to potential pitfalls, scientific funders and researchers can take an important part in attempts to safeguard the public and ensure the continuation of potentially important scientific research.
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