With initial planning support from the Canadian and American genome mapping programs, Professors Bartha Knoppers (Montreal) and Alexander Capron (Southern California) are in the process of organizing the GELS International Databank and Reporter: Genetics, Ethics, Law and Society. The aim of GELS is to enable people is science, medicine, government, low, and ethics around the world to stay abreast of statues, regulations, guidelines, and analysis produced by their counterparts in other nations and international organizations.
GELS will have two principal components, an electronic Databank and a loose-leaf Reporter. The databank will be accessible on the World Wide Web (WWW) through the Internet. It will contain several types of materials:
First, abstracts of all documents will be prepared in English (and translated into Spanish and French); users will be able to search in all abstracts for keywords.
Second, all documents in Roman letters will be entered in their original language and will be down-loadable as text to the user's computer; documents in non-Roman text will be scanned and accessible in graphic format.
Third, the analyses or regional and international trends and developments prepared for GELS will be available three months after they are distributed in printed form in the GELS REPORTER.
Finally, the bibliography on ethical and legal issues in genome mapping and genetics prepared by Michael Yesley of the Department of Energy will be linked to the GELS databank, although it will be kept on a file server at the DOE facility in Los Alamos; it is expected that it will be broadened to include more foreign language publications.
The GELS REPORTER will appear twice each year as loose- leaf pages to be added to a tabbed set of binders. In addition to providing the full text of all documents received into the databank since the last semi-annual distribution, the REPORTER will contain original material in two parts. First, each distribution will contain experts' analysis of several important topics (such as privacy; patenting; insurance; forensic uses of genetics) on an international basis; second, each distribution will also describe notable recent developments in particular geographic regions and among international organizations, with the data organized according to a common matrix so that readers interested in any particular topic will be able to find it under each regional heading. The published version of the REPORTER will also contain the international bibliography, as well as an index. In sum, using the DATABANK and /or the REPORTER, virtually all legal, regulatory, and ethical materials from governments, non-governmental organizations, and major professional bodies concerning the development and use of genome maps and genetic data will be available on a topical as well as a geographical basis. Thus, persons or groups interested in comparative information on topics of concern to genome mapping efforts - such as accessibility and confidentiality of genetic information; policies on patenting gene sequences; implications for employment and insurance - would have a ready source not only for all governmental policies and rulings but also for informed appraisal of the significance of such policies in the context of developments in the field to discover connections (in principles and objectives as well as practical methods) among these topics that are not always analyzed together, thereby enriching the thinking in this field.
Potential Structure for the GELS DATABANK and REPORTER
1. Lead synthesis articles by renowned international experts on ethical, legal and social issues raised by the Human Genome Program.
2. Regional developments would be analyzed by experts on legislative, regulatory, and case law and bioethics.
3. Reports and Documents would be printed in full text in their original language, along with an English language abstract (supplemented by abstracts in Spanish and French, if funding and /or international in-kind support permits).
4. The International Genetics, Ethics, Law and Society Bibliography prepared for the Department of Energy by Michael Yesley would be expanded to include references from all participating HUGO countries, with topic and author indexes.
Prof. Bartha-M. Knoppers,
Faculty of Law, University de Montreal, 31021 Chemin de la Tour, C.P. 6128, Montreal , Quebec, H3C 3J7 CANADA.
I have offered them the use of the newsletter references, and I should also point out that the newsletters are available on Email or disc copy, and it is on-line for free as of June, 1995.
One part of the current outline which may disturb some is why only include references from participating HUGO countries (No.4 at end)? I know the people involved are interested in international developments, and B. Knoppers and M. Yesley have been supporters of the Eubios Newsletter and IAB Genetics Network. One also hopes that the UNESCO database efforts, may also be incorporated, and everyone can build together to make a better product, and open access.