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Reflections: the challenge of biotechnology and public policy.

https://arctichealth.org/en/permalink/ahliterature185886
Source
McGill Law J. 2000 May;45(2):559-66
Publication Type
Article
Date
May-2000
Author
B M Knoppers
Author Affiliation
Faculte de droit (CRDP), Universite de Montreal, Canada.
Source
McGill Law J. 2000 May;45(2):559-66
Date
May-2000
Language
English
Publication Type
Article
Keywords
Animals
Biotechnology - ethics
Canada
Consumer Participation
Genetics, Medical
Genomics
Humans
Policy Making
Public Policy
Abstract
Rapid developments in the area of biotechnology within the next decade are likely to have a significant impact on Canadian society. This article outlines the practical and ethical issues that will need to be addressed in the face of scientific advances, and contemplates the development of an appropriate policy framework in this regard. Surveying the approaches to policy development taken thus far, the author notes the underlying need for greater transparency and public participation. Rational and effective policies will only result from additional basic scientific data being made available to a more informed and engaged Canadian public.
PubMed ID
12688285 View in PubMed
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Strategies for consulting with the community: the cases of four large-scale genetic databases.

https://arctichealth.org/en/permalink/ahliterature178434
Source
Sci Eng Ethics. 2004 Jul;10(3):457-77
Publication Type
Article
Date
Jul-2004
Author
B. Godard
J. Marshall
C. Laberge
B M Knoppers
Author Affiliation
University of Montreal, Faculty of Medicine, Bioethics Programs, QC, Canada. Beatrice.godard@umontreal.ca
Source
Sci Eng Ethics. 2004 Jul;10(3):457-77
Date
Jul-2004
Language
English
Publication Type
Article
Keywords
Community-Institutional Relations
Consumer Participation
Databases, Genetic
Estonia
Great Britain
Humans
Iceland
Quebec
Abstract
Large-scale genetic databases are being developed in several countries around the world. However, these databases depend on public participation and acquiescence. In the past, information campaigns have been waged and little attention has been paid to dialogue. Nowadays, it is important to include the public in the development of scientific research and to encourage a free, open and useful dialogue among those involved. This paper is a review of community consultation strategies as part of four proposed large-scale genetic databases in Iceland, Estonia, United Kingdom and Quebec. The Iceland Health Sector Database and Estonian Genome Project have followed a "communication approach" in order to address public concerns, whereas, UK Biobank and Quebec CARTaGENE have chosen a "partnership approach" to involve the public in decision-making processes. Following a comparison of community consultation strategies, the main concerns of the public are examined as well as the challenges of involving communities. Importantly, reported across all groups is the concern for confidentiality, respect of the individual, transparency, and the donor's right to access to their own result. However, even if researchers demonstrate a willingness to respect values such as fair representation, transparency and accountability, there is still a risk that the public will mistrust researchers and simply will not participate in sufficient numbers. Complications may arise when individual and community interests conflicts. The implementation of a partnership approach is definitely involving and costly; however, if used properly, this method can improve both participation and so database development.
Notes
Comment In: Sci Eng Ethics. 2004 Jul;10(3):479-8015362703
Comment In: Sci Eng Ethics. 2004 Jul;10(3):481-215362704
PubMed ID
15362702 View in PubMed
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