Strategies for consulting with the community: The cases of four large-scale genetic databases

Science and Engineering Ethics 10 (3):457-477 (2004)

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.
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DOI 10.1007/s11948-004-0003-y
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References found in this work BETA

Commentary: What "Community Review" Can and Cannot Do.Eric T. Juengst - 2000 - Journal of Law, Medicine and Ethics 28 (1):52-54.
What “Community Review” Can and Cannot Do.Eric T. Juengst - 2000 - Journal of Law, Medicine and Ethics 28 (1):52-54.

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Citations of this work BETA

Population Genomics and Research Ethics with Socially Identifable Groups.Joan L. McGregor - 2007 - Journal of Law, Medicine and Ethics 35 (3):356-370.
Population Genomics and Research Ethics with Socially Identifiable Groups.Joan L. McGregor - 2007 - Journal of Law, Medicine and Ethics 35 (3):356-370.
Respecting Donors to Biobank Research.Tom Tomlinson - 2013 - Hastings Center Report 43 (1):41-47.

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