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.
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.
Comment In: Sci Eng Ethics. 2004 Jul;10(3):479-8015362703
Comment In: Sci Eng Ethics. 2004 Jul;10(3):481-215362704