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1st
EMBL/EMBO Joint Conference 2000 |
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Session
III |
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Panel discussion Public understanding of genetic information |
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Chair Alastair Kent [Chair], Genetic Interest Group, UK
Barbara Cohen, Director of the Office of Communications, The Ludwig Institute for Cancer Research, New York, USA
Jean-Louis Mandel, Professor of Genetics, IGBMC, Illkirch, France
Alexandre Mauron, Professor of Bioethics, University of Geneva Medical School, Switzerland
Vivienne Parry, Writer and broadcaster, UK
There are a number of issues that have to be addressed in our discussion.
It is clear that a very large proportion of the public is opposed
to the introduction of foods, feeds or agricultural products that
have been modified using modern biotechnology.
If we are convinced that GM foods pose little or no risk to human
health and to the environment, how do we convince others? How do
we justify our conviction? If this conviction is based on comparison,
why test if we don't test everything?
Why can we not test new GM-derived foods in the same way as we
test new medicines? What are the constraints for testing foods which
suggest that we should not apply the same standards as we insist
on for pharmaceuticals. There are many answers, including the simple
question as to what constitutes a dose.
Why is it acceptable to consider GM as a class, rather than discussing
each modified product in relation to the changes made and possible
predicted effects, trying to take into account indirect and delayed
effects. We can be fairly sure that the products currently on the
market have no immediate effect on consumers [or we would have already
seen the impact]. We have some evidence that the impact on the environment
has been benign, if not providing an advantage – this evidence suggests
that wildlife diversity has actually increased. Others speculate,
based on laboratory experiments, that the delayed or indirect effects
could be dreadful for the environment. Can we find any common ground?
When traits are introduced that have real changes on the way in
which products interact with the environment, such as drought resistance,
saline tolerance, modified oils, will not the blanket objection
and therefore the blanket acceptance by scientists make the assessment
more difficult and more dangerous?
Biographies
Alastair Kent [Chair]
Alastair Kent is the Director of the Genetic Interest Group [GIG],
the UK alliance of charities and support groups for people affected
by genetic disorders. GIG's mission is to promote the development
of the scientific understanding of genetics and the part that genetic
factors play in health and disease, and to see the speedy transfer
of this new knowledge into improved services and support for the
treatment of currently incurable conditions. Prior to joining GIG
Kent worked for a number of voluntary organisations on issues concerning
policy, service development and disabled people.
Barbara Cohen
Barbara Cohen is currently the Director of the Office of Communications
at the Ludwig Institute for Cancer Research, an international, not-for-profit
organization that conducts basic and clinical research with the
goal to understand and control cancer. Barbara was born and raised
in Munich, Germany, where she received her undergraduate training.
From there she moved to Houston, Texas, to obtain a PhD in developmental
genetics. After a short stay as a postdoctoral fellow at the European
Molecular Biology Laboratory, she joined the editorial staff of
the scientific journal Nature in 1993. She was responsible for the
peer-review process and the ultimate publication of manuscripts
dealing primarily with developmental biology, human genetics and
plant science. In 1997, Barbara became Editor of the monthly journal
Nature Genetics. After three years at the helm of that journal,
she moved to the Ludwig Institute, where she is responsible for
internal communication as well as public information. Stemming from
a passion for science and its communication, Barbara's professional
interests include scientific publishing, the ethical and social
implications of biomedical research, and the interface between basic
research and clinical applications.
Jean-Louis Mandel
Jean-Louis Mandel was born in 1946 in Strasbourg [France]. He received
his MD and PhD from University of Strasbourg, and is currently Professor
of Genetics at the Faculty of Medicine of Strasbourg, and Head of
the Human Molecular Genetic Group at the Institut de Génétique et
de Biologie Moléculaire et Cellulaire [CNRS, INSERM, Université
Louis Pasteur]. He has received the Baschirotto Prize from the European
Society of Human Genetics [1998] and the Louis-Jeantet Prize [Geneva,
1999]. He has been involved in research on Fragile X since 1983,
in the identification and characterization of several disease genes,
and notably in the analysis of diseases caused by trinucleotide
repeat expansions.
Professor Mandel is also the Director of the DNA Diagnostic Laboratory
for Genetic Diseases, at the Faculté de Médecine and University
Hospital in Strasbourg, that conducts tests for about 30 diseases,
and he is on the scientific board of several associations for patients
affected by specific genetic diseases.
Alex Mauron
Alex Mauron is Associate Professor of Bioethics at the University
of Geneva Medical School, where he teaches ethics to medical students.
He holds a PhD [Lausanne, 1978] in molecular biology, with research
experience in molecular genetics and neurobiology.
Current scholarly interests [since moving to the field of bioethics
in 1988] include ethical issues in human genetics [gene therapy,
diagnostics, social implications of genetic data], standing of the
human embryo, biological concepts in ethics, teaching bioethics,
and clinical ethics [futility, end-of-life issues].
He is a member of the Central Ethics Commission of the Swiss Academy
of Medical Sciences, the Federal Ethics Commission on genetic engineering
and several other ethics committees. He has published widely on
the ethical issues of genetics and reproduction, as well as on clinical
ethics and participated in the formulation of ethical guidelines
and/or other policy documents on several bioethical issues. In addition,
he is a regular columnist on bioethics in the French-language Swiss
daily Le Temps
Genetics offers the promise of contributing to better medical treatments
by improving drug efficacy and safety. The individual response to
a drug is affected by genetic variation altering the mechanisms
of drug absorption, distribution and metabolism, as well as the
functioning of the target receptors or enzymes. Genetic approaches
will also improve disease classification by defining the underlying
cause of disease. In the short term it may be possible to identify
subgroups of patients who will benefit from a drug as well as those
most likely to suffer an adverse reaction. In the long term, genetics
may be used to identify new targets for therapeutic intervention.
To gain these benefits, it will be necessary to collect medical
data on large cohorts of individuals and to seek correlations with
genetic variation within the same cohort. The data set generated
at the population level could have implications at the level of
the individual for life insurance, medical insurance, criminal tracking
[e.g. rape cases] and employment practises. As a society, we need
to judge the risk benefit ratio of applying these new approaches.
The issues are not new but the scale of the opportunity and the
potential risks are now much greater.
Vivienne Parry
Vivienne Parry is a writer and broadcaster. She has presented BBC
TV's well known science magazine programme, Tomorrow's World as
well as a number of science documentaries for BBC Radio 4. A scientist
by training, she also writes for a wide range of magazines and is
the popular and irreverent columnist of the world's biggest selling
Sunday paper, the News of the World. She is the author of several
books on health, including one on antenatal testing. |
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