Mapping the Human Genome
Grisolia, Santiago, The Hastings Center Report
Mapping the Human Genome
From early morning until late afternoon of the 24th through the 26th of October, 1988, scientists from some twenty-four countries met in Valencia to discuss the present status and future prospects of the Human Genome Project. The media's extensive coverage of the meeting at the time gave an indication of the widespread interest in the practical, social, and ethical aspects of the project.
Despite a traditional lack of great interest in science, and in contrast to its level of industrial development, Spain now ranks seventh to eighth in the world in biochemistry and molecular biology. Yet among Spain's many excellent biochemists and molecular biologists there are few researchers whose main interest is in the genome project. Thus, as one workshop participant commented, Spain offers a neutral ground in this highly competitive area.
These were the reasons that prompted a committee of the Valencian Council of Culture and the Foundation for Advanced Studies to request help and cooperation from other Spanish organizations, the University of Kansas and National Institutes of Health in the United States, the European Communities, and UNESCO to organize a workshop on the Human Genome Project. Initially planned for about 100 outstanding scientists, the workshop was designed to stimulate international cooperation and interest in this area, particularly in countries that had thus far shown little or no interest in it. The workshop engendered quite unexpected enthusiasm and in the end brought together over 200 participants from Belgium, Brazil, Chile, Denmark, East Germany, France, Greece, England, Hungary, Ireland, Italy, The Netherlands, Norway, Poland, Portugal, Scotland, Sweden, Switzerland, the United States, the Soviet Union, West Germany, and Yugoslavia as well as Spain.
The overall objective of the Workshop on International Cooperation for the Human Genome Project was to promote cooperation among scientists of many countries in this new and prominent field of molecular genetics. During the workshop participants discussed the possible benefits, especially medical and technological, as well as the new ethical and social problems to which the project would give rise in the future. The project, and therefore the workshop, attracted the attention and assistance of many sources, official and private.
The first two days of the workshop were devoted entirely to scientific developments. Some fifty presentations addressed selected medical aspects, genetic and physical mapping, sequencing, data bases, computers, cloning, DNA manipulation, and gene libraries. The last day was devoted to discussion of ethical aspects of the project and intellectual property issues. The meeting ended with a general discussion, presided over and moderated by Dr. Victor McKusick, president of the Human Genome Organization (HUGO), and Dr. James Wyngaarden, director of the National Institutes of Health in the U.S. This general discussion resulted in the recommendations entitled the "Valencia Declaration."
Although the question of setting ethical limits regarding the manipulation of human genetic material had been posed informally during other sessions by participants wishing to avoid experiments with germ cells, it was Prof. Jean Dausset, president of The Human Polymorphism Center in Paris, who led the final discussion of the topic and vigorously defended the need to set such limits. Participants already involved in this area defended the forensic use of genetic material. Many agreed with Prof. Dausset, in stressing that genetic manipulation should not necessarily give rise to fear because, without doubt, the benefits for mankind will be of great importance. This was considered particularly true in the fields of preventive medicine and the therapeutic approach to disease. Nonetheless, Prof. Dausset adamantly challenged genetic manipulation of human embryos or reproductive cells, arguing that the genetic inheritance of man could be dangerously modified by such experimentation. …