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Mapping the human genome.

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. He urged geneticists not to become "sorcerers." He also declared his opposition to the use of genetic material by police or in forensic medicine.

Other participants pointed out that it is very difficult to adhere entirely to strict regulations. Thus, for example, a number of years ago the European Council--as well as the laws and regulations of many countries--forbade interspecies in vitro fertilization. Nevertheless, these techniques are widely used in many laboratories to study the chromosomes of human spermatozoids, in fertilizing hamster eggs to determine the quality of semen from donors for artificial insemination.

Science is, or at least should be, based on objectivity. And therein lies its conflict with ethics, because ethics as such is not an objective discipline. Rather, it tends more to employ principles that vary with time and people. This was demonstrated by the workshop. After a very spirited discussion, the motion to address the genetic manipulation of sexual cells in the final recommendations was not accepted. This contrasts with the conclusions of the Fifth International Summit Conference on Bioethics, which recommended that experimentation with sexual cells be prohibited (see Alexander M. Capron, "The Rome Bioethics Summit," Hastings Center Report, August/September 1988). My own impression is that, in contrast to the meeting at Asilomar that led to a moratorium on such research for fear of the possible consequences of experiments in genetic engineering, most scientists at the Valencia workshop considered the regulation of any experimental procedure by ethical recommendations impractical. Instead, they held a more realistic perspective that controls on genetic engineering could be imposed only by scientists themselves.

One distinguished participant asserted that an important but neglected aspect of the project--it was brought up only in the discussion on ethics--was the role of less developed countries that have no easy access to techniques of genetic engineering. It was generally agreed that access to genetic technologies, fellowships, and information for the countries of the Third World must be promoted. It was also suggested that attention be paid to those genetic problems especially common in Third World populations.

As the final recommendation regarding HUGO illustrates, there is great interest in developing international cooperation, the main objective of the meeting. Unfortunately, a motion, vigorously supported by several participants, to accept UNESCO as the principal agent for organizing international cooperation in the project was rejected. UNESCO's expertise in facilitating international cooperation and its much broader international constituency would be very beneficial to the project. A more recent meeting in February 1989, attended by both participants from the Valencia seminar and UNESCO, in fact laid the groundwork for enhanced cooperation between HUGO and UNESCO.

The enthusiasm for the project must be sustained in continuing action if we are to share efficiently the results of this new field of genetic research, and monitor the new ethical and legal problems that will undoubtedly arise. But the project faces serious problems in developing efficient international (as well as national) cooperation, particularly without a common source of funding. Participants also emphasized the need to prevent competition and antagonism between groups or nations in a highly competitive area, especially with regard to the medical and technical applications of the knowledge attained by the project.

A number of participants commented privately that if the recently formed HUGO is to be effective (and it should be remembered that this organization met for the first time in Switzerland in September, just six weeks before the Valencia workshop), every nation must contribute funding to the best of its abilities. Clearly, although many sympathize with HUGO and its wish to be independent of governmental agencies--the meeting in Switzerland was financed by the Howard Hughes Foundation--the organization faces many problems. UNESCO participation, as a supporting, parallel, or collaborative organization, could possibly have been ideal to expedite the aims of HUGO. At any rate, HUGO, as well as interested organizations such as UNESCO, the European Communities, and the World Health Organization, should calculate the real cost of this research and develop a realistic formula to apportion it among nations. These organizations should also exert influence on governments or their agencies, especially in the leading nations, to stimulate the project and promote its international scope.

Finally, the majority of scientists present agreed on the necessity of establishing international rules to guide the project. For these, the Declaration of Valencia may serve as a beginning. Santiago Grisolia is director of the Cell Research Institute, Valencia, Spain, and Distinguished Professor of Biochemistry at the University of Kansas Medical Center, Kansas City, KS.
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Author:Grisolia, Santiago
Publication:The Hastings Center Report
Date:Jul 1, 1989
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