UNITED NATIONS PANEL TOLD OF GREAT POTENTIAL OF HUMAN GENOME RESEARCH;

NEED FOR GLOBAL COLLABORATION IS STRESSED

Experts Review Possible Medical Benefits, Ethical Questions,

Protection of Privacy, Coordination of Studies, Related Issues

The promise of the human genome, and its potential for a medical revolution in this century, were described at a United Nations panel discussion at Headquarters this morning.  It was said that gene research held tremendous possibilities, but nations needed to work together on research and the application of its results.

The panel was organized by the Division for Economic and Social Council Support and Coordination of the Department of Economic and Social Affairs in collaboration with the Inter-Academy Council.  It explored the scientific, medical and ethical aspects of DNA research.

The panel was chaired by Francisco Seixas de Costa (Portugal), Chairman of the General Assembly’s Second Committee (Economic and Financial).  Serving as co-moderators were Michael Doyle, Special Adviser and Assistant Secretary-General in the Executive Office of the United Nations Secretary-General and Professor Bruce Alberts, President of the National Academy of Sciences.

Presentations were made by Professor Eric Lander, Massachusetts Institute of Science and Technology; Professor Arturo Falaschi, President of the International Centre for Genetic Engineering and Biotechnology and Professor Ruichi Ida, Chairman of the International Bioethics Committee of the United Nations Educational, Scientific and Cultural Organization (UNESCO).

Professor Lander said everything that happened to the human body could be described in terms of the human genome.  Research could lead to understanding human genetic variation as well as the details of genetic diseases.  It was as if scientists had been given the keys to the greatest library on the planet -- a library that contained 3.5 billion years of information.

Crucial for building national capacities for research on the human genome was training, said Professor Falaschi.  Also important was the establishment of national laboratories and research programmes, and access to scientific information.  Resources for building national capacities were available through existing international cooperation programmes and international organizations as well as foundations and charities.

Professor Ida said the International Declaration on the Human Genome contained the basic ethical standards of gene research.  It stressed the importance of human dignity and human rights in such research, and stated that scientific research should be conducted under ethical norms.  People also had a right to privacy regarding their genetic information.  The Declaration stated that no one could be subject to discrimination based on his or her genetic information.

Questions were posed to the panel by the representatives of the Republic of Korea, Grenada, Egypt, Canada, France and Belgium.

Panel Discussion

FRANCISCO SEIXAS DE COSTA, (Portugal), Chairman of the Second Committee, introduced the panellists.

MICHAEL DOYLE, Special Adviser and United Nations Assistant Secretary-General, said the promise of the human genome held real potential.  The knowledge of the genome was unleashing a medical revolution for the twenty-first century.  The United Nations had played an important role for setting a normative framework research on the human genome.  Member States, however, now faced important policy dilemmas, dealing with issues of patentability and ownership of DNA sequences. There was important diplomatic and political work to do in this area.

BRUCE ALBERTS, President of the National Academy of Sciences, said academies of science were located in 80 countries.  Those academies worked among other things to improve science education for children around the world.  They also attempted to improve scientific techniques in agricultural practices.  That was an important issue for every nation:  how to feed their populations.  The Inter-Academy Council was an organization dedicated to making science work in public policy.  It was run by the presidents of academies of science around the world.  It looked at how nations could build their own capacities for science to improve their nations.

ERIC LANDER, Professor, Massachusetts Institute of Science and Technology, said that at its core biology was about information.  That information was encoded in the DNA of every living organism.  By understanding those basic pockets of information, people could understand much more about the world.  Work on the human genome could lead to understanding human genetic variation as well as the details of genetic diseases.  The last quarter of the century had been dedicated to identification of all human genes.  The complete human DNA sequence contained

3 billion bases and that sequence was being decoded by the Human Genome Project, under way in many countries around the world.  The parts of that sequence that had already been decoded were available to the public on the Internet.

The human genome sequence was for medicine what the periodic table was for chemistry, he said.  Everything that happened to the human body could be described in terms of the 35,000 building blocks (or genes) of the human genome.  Medical and population studies of genetics were very important.  Any two people in the world differed from about one letter in 1300.  Most people thought they were more closely related to those in their country than to those in other countries, but genetics told us that was not correct.  The amount of variation in humans was extremely small.  There was in fact much more variation between two chimpanzees than there were between two humans.  The small variants in human genes, however, could be traced to various diseases.  For example, one variant in genes made a person twice as likely to get Alzheimer’s disease.

He said DNA work was shedding light on disease.  Genes could be used to determine if a person was inclined to get a disease, and also how a person would respond to certain kinds of treatments.  Genomics was giving the world a new view of biology.  It was as if scientists had been given the keys to the greatest library on the planet -- a library that contained 3.5 billion years of information.  However, scientists barely knew what to do with that information; a world effort to focus studies was required.  All countries around the world must contribute to that shared effort.  “If we are going to do this correctly, we must do it together,” he said.

ARTURO FALASCHI, President, International Centre for Genetic Engineering and Biotechnology, addressed the issue of building national capacities for research on the human genome and its application.  Among the aspects that must be addressed in building national capacities, he said, were training, the establishment of national laboratories and research programmes and access to scientific information.  The most important thing was to train people.  In that regard, PhD and post-doctoral training programmes were crucial, along with the provision of support upon a scientist’s return his or her home country.  It was also important for those who were trained to then train others.  Areas of training should include basic cell molecular biology and cell genetics, as well as bioinformatics. 

Turning to the importance of establishing national laboratories, he said that each country should identify centres of excellence and concentrate on them.  It was essential to provide Internet connectivity in those laboratories.  The main objectives of those laboratories were to diffuse technologies in the country and train scientists and technicians.  In building national research programmes, it was necessary to concentrate on a few subjects and sites, and encourage collaboration with laboratories in industrial countries as well as connect with existing international programmes, both public and private.

He said that access to scientific information was a vital aspect of building national capacities, including the provision of subscriptions to scientific journals and publications, free of charge.  It was also important to encourage the start-up of small knowledge and technology-based companies, as well as international agreements for the transfer of know-how at nominal costs.  The protection of intellectual property must always be considered as it would encourage the best scientists to do their work.  Resources for all of the above were available through existing international cooperation programmes and international organizations, as well as foundations and charities. 

RUICHI IDA, Chairman of the International Bioethics Committee of the United Nations Educational, Scientific and Cultural Organization (UNESCO), said that while other speakers discussed the scientific aspects of the human genome, he would discuss the ethical aspects of the issue.  He said UNESCO had created in 1993 the International Bioethics Committee.  One of its objectives was to create the Universal Declaration on the Human Genome and Human Rights,which was endorsed by the General Assembly in 1998.  It contained the basic ethical standards of gene research.  It stressed the importance of human dignity and human rights in such research.  The human genome represented the human species as a whole and was not the property of any single government or other entity.  People had a right to their genetic information as the basis of his or her identity.

The Declaration also stated that scientific research should be conducted under ethical norms, he said.  Genetic research could not be done without human tissue samples.  Those who gave the samples should be respected as to their human rights.  The information contained in the sample should also be protected.  The Declaration required the free, prior and informed consent by the individual who provided the samples.  That person also had a right to know or not to know the information in their DNA.  The person must know the purpose and the results of the test, especially those persons that were vulnerable such as those with mental handicaps.

The genetic data derived from genetic research could be used for identification of diseases, he said.  Its confidentiality must be specifically guaranteed and that was related to the right to privacy, a basic principal of human rights.  Genetic data could be used in a variety of improper purposes such as discrimination in employment and racial discrimination.  The Declaration stated that no one could be subject to discrimination based on his or her genetic information.

He said the data derived from gene research could be used in the medical field, such as in symptomatic testing and predictive testing.  In the social field, such data could be used for forensic purposes as well as the creation of new pharmaceutical products.  In short the Declaration required respect for such things as human dignity, privacy, non-discrimination and justice in gene research. However, there were still many issues to consider, especially with the developments of the Human Genome Project.  For that reason the International Bioethics Committee of UNESCO intended to produce by 2004 a new declaration on the human genome and its various aspects.

Questions and Answers

Responding to a question on the freedom to do research on the human genome in the United States, Mr. LANDER said he felt free to underline research about fundamental knowledge.  Much of the controversy in the United States was associated with stem cell.  As one moved from basic research to applications in gene therapy, the problems became more difficult.  In such areas, each government had to consider the appropriate protections for individual patients.  It was true that some of the information in human genome research was potentially unsettling, as it might conflict with social ideas.  While such information was important, it must not be forced on anyone.

Asked about gene therapy, Mr. ALBERTS said there had been much publicity on the issue without much progress having been achieved yet.  There was no doubt that it would be useful for some diseases.  Gene therapy involved adding genes -– parts of one’s own chromosomes -– to cells that were put into one’s body.  If done correctly, it might be able to cure otherwise incurable diseases.  The confusion of the public was due to false excitement in the press about gene therapy.

As to what a human genome was, he said that every organism was made up of cells.  Humans were multi-cell organisms.  The “human genome” was a term coined by scientists to refer to the entire collection of DNA that made up a person.

On the issue of convincing governments and the general public of the need for scientific research on that subject, Mr. IDA said the first step was to educate the general public from an early level, and to give them basic knowledge in the area of science, and the ethics of science.

Mr. FALASCHI added that genomics was essentially part of biology and the teaching of modern biology must begin at the earliest level possible.  Nowadays, children in primary school learned about DNA.  The most cost-effective immediate investment was to conduct training at university and post-university levels.

On how to ensure that more research was done in the developed countries on those problems which predominantly affected people in those countries, Mr. ALBERTS said there were many scientists in the United States who wanted to work on problems relevant to developing countries.  However, there was a lack of knowledge on those problems, as well as a lack of resources to fund such research.  Since the problems of the poor would not profit private corporations, more public sector research was necessary.

Mr. LANDER added that there were thousands of scientists coming out of graduate schools in developed countries who were interested in doing research on the problems most affecting developing countries.  However, the main problem was a lack of funding for such research.

He said the nature of diseases had changed and would continue to change; that nature depended on genetic predisposition and environment.  If the environment changed, it could be possible for “good” genes to act as “bad” ones.  There were genes, for example, which were known to be good for heart disease but bad for cancer.  He cautioned against classifying genes into good and bad and trying to change genetic codes.

In response to a question regarding science and sustainable development,

Mr. ALBERTS said nations had to determine their own specific needs.  Many nations did not need the advanced study facilities to compete with the United States, but they did need capacities to deal with diseases and public health.  The Journal of the National Academy of Science would now be available free over the Internet to developing countries.  However, there needed to be a certain base of knowledge to make use of that information.  There were a great number of resources that would be available in the future that could be used to promote development in all countries.

On a question regarding the lack of women in the field of science, Mr. IDA said UNESCO had taken a number of steps to promote science education among women and girls.  There were now seven female members of the Bioethics Committee, out of a total of 36 and it was hoped that that proportion would increase in the future. The most important thing was the promotion of science education for women in every country, and UNESCO worked to help those efforts.

On the same question, Mr. LANDER said that biology schools in the United States were now 50 per cent female.  That was not the case 10 years ago.  That was due to efforts to encourage interest in science among women.  There was certainly no inherent reason why women should not have parity in the sciences.

In answering a question about a potential decision on whether to have a child that was known to have handicaps, Mr. LANDER said the safest answer was allow parents to make their own decisions regarding their offspring.  It was therefore important to educate parents, so that they could make an informed decision.  The strength of biology was in the diversity of life, and respect for that diversity should be in the forefront of efforts to face the genetic challenges ahead.

To the same question, Mr. IDA said there might be cases where the morals of a parent might differ from the ethics of a society.  Society may not allow

abortion, for example, but a parent may not want to have a mentally handicapped child.  That was a difficult issue to resolve and each case had to be looked at individually.  There was a need to discuss the matter further to come to a consensus on ethics and bioethics.  But those ethics might differ from country to country.

Regarding the use of genetic data, Mr. IDA said there was a consensus in the Bioethics Committee that any international declaration needed to examine all genetic aspects, including the use of genetic data.

On the interaction between bioethics and other fields, Mr. IDA said ethics was a behavior code that every society determined for itself.  Bioethics was rooted in dialectics across various fields that were essential for human societies.  That was why there was a need not to talk of definite laws because the definitions and rules were less precise.  Different types of instruments could be used in various ways.

In a closing comment, Mr. DOYLE said the discussion had been an excellent example of how science could be used to address problems around the world.  The discussion was also an example of the kind of cooperation between the world of science, ethics and the United Nations that was essential for the future of the planet.

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