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The Rome bioethics summit.

The Rome Bioethics Summit

International analysis and direct government involvement, two phenomena that have been increasingly notable in the world of bioethics in recent years, came together for a week in Rome this spring. From April 10 to 15, the Italian government hosted the Fifth International Summit Conference on Bioethic, which focused on the efforts now underway to map and sequence the human genome. Originally proposed by Prime Minister Nakasone, bioethics "summits" were inaugurated in 1984 when the first such meeting was held in Japan. That session on the social impact of the new biological discoveries was followed by ones in France on artificial fertilization, in Germany on the neurosciences and society, and in Canada on human subjects research. It is expected that sponsorship will continue to rotate through the Group of Seven, with subsequent meetings in the United States and the United Kingdom, and perhaps in Brussels as well under the sponsorship of the European Economic Community (EEC), the summits' eighth participant.

Like its predecessors, the primary purpose of the Rome conference was to provide advice to the heads of state of the seven major industrial democracies at their annual summit meeting (held this year in Toronto in June). Twenty-one national delegates, three representatives from the EEC, one from the World Health Organization, and one from the International Council of Scientific Unions joined summit chairman Professor Glauco Tocchini-Valentini for the five-day meeting.

Six of the eight half-day sessions consisted of presentations by the delegates--scientists, physicians, clerics, lawyers, and government officials--on topics germane to their areas of expertise. These talks not only made clear that the new knowledge of the human genome will quickly generate momentous and complex ethical and social issues when applied to predictive and curative medicine, but also that the prospect of possessing this knowledge itself raises novel questions even as it holds enormous fascination for scientists.

Indeed, the desirability and feasibility of an all-out scientific effort to map and sequence the human genome have been hotly-debated for the past several years. A National Research Council committee recently urged that the United States immediately commence a fifteen-year program at an estimated cost of $3 billion. The Department of Energy has expressed interest in running such a project, while the National Institutes of Health has moved to take leadership by budgeting twenty-eight million dollars for the first year of such an effort.

The potential for both competition and collaboration is equally pronounced on the international level. The science ministers of the EEC nations have been debating establishing a cooperative European program to match the U.S. initiative and the "human frontiers" program recently launched by the Japanese. Some scientists fear that a crash effort aimed at genome mapping will divert research funds from other, more pressing objectives. They are also concerned it will prove more costly (and no swifter) than a more measured approach that would build on findings accumulated through investigations of particular genes and on continuing rapid improvements in molecular genetic technology. Yet the biomedical community seems not seriously to doubt that this massive undertaking--mapping the 100,000 human genes to their usual locations on the chromosomes and then establishing the actual sequence of the 3 billion nucleotide pairs that make up the genes and govern the body's production of proteins--will eventually be completed and will, among other things, prove of inestimable benefit in preventing and treating disease.

The scientists at the Rome meeting were overwhelmingly supportive of the research, and the delegates recommended that "concerted national and international efforts should be undertaken through genetic mapping, sequencing, and other research to allow for rapid generation and dissemination of knowledge in this field." The delegates firmly agreed that "there are no intrinsic limitations to the acquisition of knowledge of the human genome and that research in this area should be strongly encouraged." The view that ethical and religious principles erect no a priori barriers to genetic knowledge is consistent with the conclusion of the President's Commission in Splicing Life, its 1982 report on human gene therapy, a copy of which was given to each delegate.

Two of the other conclusions of the Rome meeting--classifying somatic cell gene therapy with other medical experimentation, while doubting that "medical indications [or] ethical justifications" now exist for intentional manipulation of human germ-line-cells--are also consistent with the conclusions of the President's Commission and of such other U.S. committees as the Humam Gene Therapy Subcommittee of NIH's Recombinant DNA Advisory Committee, the major supervisory body for biomedical genetic engineering in this country.

Other recommendations from Rome--that genetic information be treated confidentially, that broad public education be provided, and that countries rely on ethics commissions to develop and oversee policy in this field--will likewise be familiar to Americans from Screening and Counseling for Genetic Conditions, a 1983 report of the President's Commission, which in turn reflected conclusions reached during the prior decade by such groups as The Hastings Center and the NAtional Research Council. [1] Looking to the future, the Rome delegates foresaw the need for DNA banks for research purposes and the development of genetic screening and disease-prevention methods, and suggested further international examination of the "applicability and appropriateness of patent and copyright law to the human genome."

That the recommendations were sensible rather than avant garde is hardly surprising given the need for consensus across cultures, both geographic and disciplinary. Still, the familiar ring of most of the results in Rome may particularly disappoint Americans. Unlike most of the topics at past summits (such as human subject research in 1987) that had already been addressed by U.S. research groups, the ethics of gene sequencing involved many novel issues. Particularly important are questions of ownership and control of genetic information (only now under study by the Office of Technology Assessment of the U.S. Congress) and the implications of reverse genetics, that is, deciphering the genetic basis of conditions and characteristics (not just disease) by studying DNA variations before their biochemical manifestations have been identified. Yet, beyond some rather general conclusions on gene mapping and sequencing (including the old standby, "needs further study"), most of the recommendations dealt not with this research but with gene therapy, which has been rather thoroughly debated in the U.S. already.

Nevertheless, the bioethics summits remain very significant. First, they manifest concern at the highest levels of government with bioethical issues. From its origins, bioethics has been characterized by attention to the roles of persons and groups beyond physicians and scientists in decisions about biomedical research and applications. Yet during the first decade particularly, bioethical investigations were largely the work of academics and of non-governmental research organizations with little official support.

Recently government has been playing a larger role, at least in the United States. Boards of various sorts have been chartered with increasing frequency by the federal government, and have been joined by local and state organizations such as the New York State Task Force on Life and the Law and the New Jersey "bioethics commission." Although the delegates to the Rome meeting did not speak for their governments, the whole meeting--from the opening speeces at the Palazzo del Quirinale by Italian President Francesco Cossiga and Minister of Research Antonio Ruberti, to the drafting of the report to the Toronto meeting of heads of state--was aimed at promoting responsible behavior by governments as well as by the research community.

Second, the summits underline the need for greater international consultation and collaboration in ethical analysis, as in scientific research. Because bioethics implicates social, legal, and even political factors that tend to be parochial rather than universal, concepts and analysis (to say nothing of specific rules and recommendations) will necessarily differ from country to country. Nonetheless, comparative examinations of problems and potential solutions can do much to shatter preconceived outcomes and to refresh nationally based discussions that have become stale from the repetition of familiar litanies.

References

[1] Marc Lappe, James M. Gustafon, and Richard Robin, "Ethical and Social Issues in Screening for Genetic Disease," New England Journal of Medicine 286:21 (1972), 1129-32; Committee for the Study of Inborn Errors of Metabolism, National Research Council, Genetics Screening: Programs, Principles, and Research (Washington, DC:: National Academy of Sciences, 1975).

Alexander M. Capron, who holds the Norman Topping Chair in Law, Medicine, and Public Policy at the University of Southern California, was one of three U.S. delegates to the Rome meeting.
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Title Annotation:Special Supplement: International Perspectives on Biomedical Ethics
Author:Capron, Alexander M.
Publication:The Hastings Center Report
Date:Aug 1, 1988
Words:1395
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