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A unique Canadian Web site is offering the public, scientists, policy
makers and patient groups fast and free access to the latest information
on the ethical, legal and social issues surrounding stem-cell research.
It is helping to keep the global community abreast of developments in
this fast-moving field.
Canada is now providing policymakers and researchers from around the
world with critical information they need to make informed decisions
about stem-cell research. Funded by the Stem Cell Network, the StemGen
Web site (www.stemgen.org) is
a comprehensive bilingual database - the only one of its type - that
provides quick and easy access to selected peer-reviewed publications,
legislation, regulations and guidelines related to stem-cell ethics,
gene therapy and cloning. It comprises information from Canada and
around the world.
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Dr. Bartha Maria Knoppers is one of Canada's foremost legal experts on the ethics of stem-cell research. The catalyst behind Canada's new StemGen Web site, Dr. Knoppers is also leads the Stem Cell Network's Theme I on the ethical, legal, social and policy issues surrounding stem-cell science. The group includes seven of Canada's top ethicists and lawyers who are working together to guide investigators and the public through the rapidly unfolding world of stem-cell research.
A professional lawyer and researcher, Dr. Knoppers is a professor at Université de Montréal and holds a Canada Research Chair in law and medicine. She also chairs the International Ethics Committee of the Human Genome Organization and was a member of the International Bioethics Committee of the United Nations, Educational, Scientific and Cultural Organization (UNESCO), which drafted the Universal Declaration on the Human Genome and Human Rights (1993-97).
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"Everything is, as we know, very much international now, and to pretend we're going at it alone, either scientifically or in terms of our understanding of the social impact (of stem-cell research), would be naïve. Learning from other countries is fundamental to the whole debate," says Dr. Bartha-Maria Knoppers, a law professor and researcher at Université de Montréal and the catalyst behind the new Web site.
StemGen includes position papers, reports and a review of current literature dating back to 2000 on topics such as germ line therapy, reproductive cloning, therapeutic cloning, somatic cell nuclear transfer (the technology that created Dolly the sheep) and research into chimeras (research tools that combine human cells with a live and developing animal host.)
Users can create their own bibliographies by entering key words - for example, "embryonic stem-cell research" - and retrieve information about what governments and health organizations have said on this subject around the world.
"What we're doing is providing people with immediate access to information that's out there, but that otherwise would take them a long time to get," says Dr. Knoppers, who also chairs the Human Genome Organization's international ethics committee.
Addressing the broader public policy issues surrounding this fast-moving science has been a priority of the Stem Cell Network since its launch as a Network of Centres of Excellence in March 2001.
As Drew Lyall, the network's executive director explains, raising awareness of the ethical and legal issues was never meant to be an adjunct to the science. "It was viewed as an integral component of the research. It's part of what we're doing to move the international stem-cell effort forward and to ensure that decisions concerning stem-cell research are made on an informed basis."
"StemGen is an incredibly important part of our research program," adds Lyall. "Without doing the work on the ethics side, there's that lack of underpinning on the scientific side."
Over the coming year, the StemGen team plans to add new features to the Web site, including an interactive Q&A section (StemFAQ) and expanded archives (GenArchives), as well as a Spanish-language portal.
StemGen is hosted on a related site also developed by Dr. Knoppers and her team. HumGen (www.humgen.umontreal.ca) provides access to global information on the legal, social and ethical aspects of human genetics.
www.stemcellnetwork.ca
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