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Community Engagement and Informed Consent in the International HapMap Project

The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand... Full description

Journal Title: Community genetics 2007, Vol.10 (3), p.186-198
Main Author: Rotimi, Charles
Other Authors: Leppert, Mark , Matsuda, Ichiro , Zeng, Changqing , Zhang, Houcan , Adebamowo, Clement , Ajayi, Ike , Aniagwu, Toyin , Dixon, Missy , Fukushima, Yoshimitsu , Macer, Darryl , Marshall, Patricia , Nkwodimmah, Chibuzor , Peiffer, Andy , Royal, Charmaine , Suda, Eiko , Zhao, Hui , Wang, Vivian Ota , McEwen, Jean
Format: Electronic Article Electronic Article
Language: English
Subjects:
Quelle: Alma/SFX Local Collection
Publisher: Basel, Switzerland: S. Karger AG
ID: ISSN: 1422-2795
Link: https://www.ncbi.nlm.nih.gov/pubmed/17575464
Zum Text:
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title: Community Engagement and Informed Consent in the International HapMap Project
format: Article
creator:
  • Rotimi, Charles
  • Leppert, Mark
  • Matsuda, Ichiro
  • Zeng, Changqing
  • Zhang, Houcan
  • Adebamowo, Clement
  • Ajayi, Ike
  • Aniagwu, Toyin
  • Dixon, Missy
  • Fukushima, Yoshimitsu
  • Macer, Darryl
  • Marshall, Patricia
  • Nkwodimmah, Chibuzor
  • Peiffer, Andy
  • Royal, Charmaine
  • Suda, Eiko
  • Zhao, Hui
  • Wang, Vivian Ota
  • McEwen, Jean
subjects:
  • Adult
  • Case Report
  • Child
  • Chromosome Mapping
  • Female
  • Genetic Variation
  • Genetics, Population
  • Human Genome Project
  • Humans
  • Informed Consent
  • International Cooperation
  • Male
  • Parents
ispartof: Community genetics, 2007, Vol.10 (3), p.186-198
description: The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.
language: eng
source: Alma/SFX Local Collection
identifier: ISSN: 1422-2795
fulltext: fulltext
issn:
  • 1422-2795
  • 1662-4246
  • 1422-2833
  • 1662-8063
url: Link


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creatorRotimi, Charles ; Leppert, Mark ; Matsuda, Ichiro ; Zeng, Changqing ; Zhang, Houcan ; Adebamowo, Clement ; Ajayi, Ike ; Aniagwu, Toyin ; Dixon, Missy ; Fukushima, Yoshimitsu ; Macer, Darryl ; Marshall, Patricia ; Nkwodimmah, Chibuzor ; Peiffer, Andy ; Royal, Charmaine ; Suda, Eiko ; Zhao, Hui ; Wang, Vivian Ota ; McEwen, Jean
creatorcontribRotimi, Charles ; Leppert, Mark ; Matsuda, Ichiro ; Zeng, Changqing ; Zhang, Houcan ; Adebamowo, Clement ; Ajayi, Ike ; Aniagwu, Toyin ; Dixon, Missy ; Fukushima, Yoshimitsu ; Macer, Darryl ; Marshall, Patricia ; Nkwodimmah, Chibuzor ; Peiffer, Andy ; Royal, Charmaine ; Suda, Eiko ; Zhao, Hui ; Wang, Vivian Ota ; McEwen, Jean ; International HapMap Consortium
descriptionThe International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.
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subjectAdult ; Case Report ; Child ; Chromosome Mapping ; Female ; Genetic Variation ; Genetics, Population ; Human Genome Project ; Humans ; Informed Consent ; International Cooperation ; Male ; Parents
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0Rotimi, Charles
1Leppert, Mark
2Matsuda, Ichiro
3Zeng, Changqing
4Zhang, Houcan
5Adebamowo, Clement
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7Aniagwu, Toyin
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volume10
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issn
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abstractThe International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.
copBasel, Switzerland
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pmid17575464
doi10.1159/000101761
tpages13