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The genome: neither angel nor devil


Milan, Barcelona, Heidelberg, London, Brussels - in these five cities, the European Genetics Foundation sought to initiate a parallel dialogue. At issue was one of the most fascinating fields of contemporary research, the results of which are posing new questions for society. 'Is the human genome the new name of the soul?' asked Alexander Mauron, of the University of Geneva, in the title of his address in Heidelberg. RTD info reports on a multifaceted approach.



GEOD, Milan, 12.11.00

'We wanted simultaneously to gauge attitudes to genetics in five distinct European areas. In each of the countries participating in these Genetics in Europe Open Days (GEOD), the partners organised their own style of debate. This diversity of approach was deliberate in the sense that it reflects the many very different ways of approaching the debate on the genetics revolution,' explains Guido Romeo, who is responsible for communications and popularisation of science at the European Genetics Foundation and the project manager of GEOD.

A complex subject requiring careful preparation
In Barcelona, 2000 young people aged between 14 and 16 from 98 schools packed the building (5000 applications were received). The organisers had selected six subjects related to the human genome for study. The students already had certain items of information and preparatory discussions had been organised in the classroom. 'It was clear during the talks and discussions that these young people were much more interested in new research than the generation of 40-year-olds. This is not surprising when you consider that over the next 10-30 years the applications of current research will become a reality,' explains Xavier Estivill, the event organiser and director of the Centre for Medical and Molecular Research at the Institute for Oncological Research in Barcelona. 'That is when the new drugs based on gene research will become available and gene therapy will be current practice for certain diseases.'

During the same week, Milan's Piccolo Teatro was also the forum for lively debates on medical progress. The discussion among the public actually present was widened to include very active, live and on-line contributions from a virtual auditorium. A great many questions were asked on the progress of research and the hopes and fears it arouses. This was hardly surprising given that none other than Craig Venter himself - the star of the human genome sequencing adventure - was among the guests.

The impact of discussions
'To have a lively debate, you need an open approach to the subjects, in scientific and ethical terms,' believes Mr Romeo. 'You must also choose speakers who are not only reputable scientists but also excellent communicators, able to listen, discuss and "confront" the public - which a scientist may view as a somewhat irrational approach. This year we invited a celebrity in the form of Craig Venter, who welcomes such a status and uses it to advance the cause of science. We believed it interesting, in a public debate, to show both the scientific and media explanations for this success and to place it in its historical context. It is a way of highlighting the cultural dynamics which come into play at the time of a major scientific or technological innovation.'

In London, an evening of conferences, ending with a discussion, focused in particular on the issue of patenting the living organism. In Heidelberg, ethical questions and public debate on genome sequencing were the subjects of much interest, with two days devoted to the 'new dialogue' which must be established between science and society. One discussion panel looked at ways of restoring public confidence in science while another dealt with the question of understanding information on genetics.

This latter theme was also discussed at a study day in Brussels, at which the GEOD prize was awarded to journalists for their work in communication on genetics. 'To meet the needs of contemporary society and above all to avoid a dangerous reversal of roles, it is essential for science and the media to approach the subject of the popularisation of knowledge in a spirit of open cooperation,' stressed Claudio Lombardo, scientific attaché at the Italian Embassy, who coordinated the event.


Victor McKusick

Genetics and medicine

"The principal changes genetics will bring to medicine are in diagnosis. A current trend is to study predisposition to common diseases rather than to diagnose rare genetic diseases. Rather than concentrating solely on case studies, attention will also focus on the analysis of mechanisms (pathogenesis). Predisposition to certain diseases will be identified with increasing precision in order to obtain a targeted and effective preventive treatment. Pharmacogenetics will not only endeavour to develop new medicines, but also to adapt existing medicines to the particular characteristics of the patient's metabolism and specific genic mutations. We will probably see a major personalisation, in genetic terms, of the dosages and active agents of medicines. The large quantity of personal data that genomic technology could provide will raise the practical problems of protecting this information and confidentiality, as well as the risk of discrimination at work or by insurance companies."

Victor McKusick, professor of medical genetics at the Johns Hopkins Hospital in Baltimore, at GEOD in Milan.


Craig Venter

State of research

'We already have results at the clinical level, for example, for colon and breast cancer. A lot of pharmaceutical industries already use information on the genome. The first diagnostic applications are already a reality. The challenge for the future, apart from diagnostics, will be to develop new treatments.

'But more than three billion letters which compose the human genome must still be interpreted. Apparently, the body has about one million different proteins and fewer than 50 000 genes. The role of half of these is unknown to us and it will require many years of research to understand them. Moreover, each gene has several functions and the old dogma of "one gene, one protein, one disease" is no longer valid. Researchers will have to make a major effort which will require the participation of scientists from every country.

'Genomics represents a major change, because it makes it possible to study not just one gene at a time, but all the genes, all the proteins and all their functions together. In the future it may be possible to treat all human disease differently and sooner or later this change will be applied to each sector of human biology.'

Craig Venter, director of Celera Genomics, Rockville. At the Piccolo Teatro in Milan, Craig Venter and Victor McKusick (see above) participated in the debate entitled 'Post-Genomic Year 0', during which they discussed the scientific, medical and industrial prospects after the sequencing of the human genome.


Frank Gannon

The need to listen

'In a changing environment, the scientist has to perform not only as a professional researcher but also increasingly as a professional communicator. Scientists cannot ignore the environment in which they are working nor the public opinion that insists on some limitations which may not even be scientifically well-founded. The words dialogue, discussion, interaction, communication, ethical concern, deliverables, product driven, applicable, and strategic are part of the vocabulary which all scientists must integrate into their professional lives today. The success of science has brought with it ever increasing responsibilities and scientists have no choice but to engage in discussions with and to listen to society in order to ensure that the promises of science will be delivered and welcomed by all.'

Frank Gannon is director of the European Molecular Biology Organisation. His speech at the Genetics Open Day in Brussels was entitled 'The wider responsibilities of scientists'.


Gert-Jan Van Ommen


'In the wake of the rapid advances in discovering new genes, a fierce debate has developed on public versus private aspects of our genome heritage. The question is as follows: how do we give maximum opportunity for scientific progress - and its benefits for citizens - while preserving the right to protect inventions for those who invest in the development of new medicines? The existence of an independent international organisation like the Human Genome Organisation (HUGO) plays an important role in this respect by offering advice during international negotiations.

'At the same time, the scientific community has an obligation to inform the public, especially young people, who will be the first to benefit from new treatment and preventative methods. It is essential for the public to be informed of the consequences of and limits to progress in genetics. Attention must also be paid to ensuring that our societies assimilate this change, while not overestimating their ability to adapt. In Western countries, citizens fear interference in their private lives. They also fear unequal access to care, and discrimination by employers or insurers. And there is the problem of health inequality at global level. The establishment of rules of ethics and morality acceptable to all cannot be left solely to Western scientists, industrialists and politicians.'

Gert-Jan B. Van Ommen, professor at the Department of Human Genetics at the Leiden University Medical Center (NL), vice president of HUGO (Human Genome Organisation). In London, he spoke in particular of the problems of intellectual property and ethics linked to human genome sequencing.


Sheila Jasanoff

Science and the citizen

'As citizens, we should be more attentive to the social and institutional context within which science and its uses develop. This context will partly determine the type of research which is carried out, and the way in which this research is used for the benefit of society. We must also demand more information on financing policies and the direction of research, as well as more transparency in scientific decision-making in the industrial sector. This latter point is particularly important when governments delegate important issues of public health and safety to the private sector (pharmaceutical industry, agricultural production). Decisions in this respect may determine possible winners and losers in relation to the benefits of new technology. This example clearly illustrates what I mean by my refusal to view science as autonomous of any system of values.

'Scientists are also citizens, so they should be sensitive to these issues. They need to think more seriously about the way their own practices may prejudge certain questions that ideally should be debated openly in a democratic society (such as cloning). Scientists also think that the public may reasonably assess what is uncertain and what is known. But disagreement about the meaning of these uncertainties does not mean that the public is being irrational. It simply means that the public does not think there are enough safeguards in case things go wrong.'

A lawyer by training, and a professor at Harvard University (USA), Sheila Jasanoff has devoted her career to the study of interactions between law, the sciences and politics. Her talk in Heidelberg was entitled 'Debating human identity: institutional commitments and consequences'.


Guido Romeo

European Genetics Foundation, Genoa (IT)
Fax: + 39 010 246 6055

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