Public Health Genomics (PHG) and Public Participation: Points to Consider
Large-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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University of Westminster Press
2009-05-01
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| Series: | Journal of Deliberative Democracy |
| Subjects: | |
| Online Access: | https://delibdemjournal.org/article/id/352/ |
| _version_ | 1811209244004843520 |
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| author | Catherine Heeney Denise Avard Jane Kaye Lucie M. Bucci Michael M. Burgess Tarik Sabry Yanick Farmer |
| author_facet | Catherine Heeney Denise Avard Jane Kaye Lucie M. Bucci Michael M. Burgess Tarik Sabry Yanick Farmer |
| author_sort | Catherine Heeney |
| collection | DOAJ |
| description | Large-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation to address the many social, legal and ethical complexities raised by the introduction of biobanks for public health research. However many researchers and decision makers struggle with how to promote public participation. This paper presents six issues that public participation must address. These issues are then applied to three large scale genetic biobank projects: CARTaGENE, Generation Scotland, and the United Kingdom Biobank. Finally, the efforts of these biobanks will be compared to the British Columbia Biobank deliberation project, which implemented a deliberative public participation experiment on biobanking. |
| first_indexed | 2024-04-12T04:34:58Z |
| format | Article |
| id | doaj.art-bf318325290d4e61b3eddc3a5c7435b8 |
| institution | Directory Open Access Journal |
| issn | 2634-0488 |
| language | English |
| last_indexed | 2024-04-12T04:34:58Z |
| publishDate | 2009-05-01 |
| publisher | University of Westminster Press |
| record_format | Article |
| series | Journal of Deliberative Democracy |
| spelling | doaj.art-bf318325290d4e61b3eddc3a5c7435b82022-12-22T03:47:49ZengUniversity of Westminster PressJournal of Deliberative Democracy2634-04882009-05-015110.16997/jdd.78Public Health Genomics (PHG) and Public Participation: Points to ConsiderCatherine Heeney0Denise Avard1Jane Kaye2Lucie M. Bucci3Michael M. Burgess4Tarik Sabry5Yanick Farmer6The Ethox Centre, University of OxfordUniversity of MontrealThe Ethox Centre, University of OxfordUniversity of MontrealUniversity of British ColumbiaCommunication and Media Research Institute University of WestminsterUniversity of MontrealLarge-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation to address the many social, legal and ethical complexities raised by the introduction of biobanks for public health research. However many researchers and decision makers struggle with how to promote public participation. This paper presents six issues that public participation must address. These issues are then applied to three large scale genetic biobank projects: CARTaGENE, Generation Scotland, and the United Kingdom Biobank. Finally, the efforts of these biobanks will be compared to the British Columbia Biobank deliberation project, which implemented a deliberative public participation experiment on biobanking.https://delibdemjournal.org/article/id/352/ethicspolicypopulation healthbiobanksdeliberative democracyPublic participation |
| spellingShingle | Catherine Heeney Denise Avard Jane Kaye Lucie M. Bucci Michael M. Burgess Tarik Sabry Yanick Farmer Public Health Genomics (PHG) and Public Participation: Points to Consider Journal of Deliberative Democracy ethics policy population health biobanks deliberative democracy Public participation |
| title | Public Health Genomics (PHG) and Public Participation: Points to Consider |
| title_full | Public Health Genomics (PHG) and Public Participation: Points to Consider |
| title_fullStr | Public Health Genomics (PHG) and Public Participation: Points to Consider |
| title_full_unstemmed | Public Health Genomics (PHG) and Public Participation: Points to Consider |
| title_short | Public Health Genomics (PHG) and Public Participation: Points to Consider |
| title_sort | public health genomics phg and public participation points to consider |
| topic | ethics policy population health biobanks deliberative democracy Public participation |
| url | https://delibdemjournal.org/article/id/352/ |
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