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GEOD, Milan, 12.11.00
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'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.
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Victor McKusick
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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.
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Craig Venter
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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.
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Frank Gannon
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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'.
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Gert-Jan Van Ommen
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Safeguards
'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.
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Sheila Jasanoff
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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'.
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