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DNA, an eternal mystery

Desoxyribonucleic acid (DNA) is a word that is not only difficult to pronounce, but it also has a different meaning for different people. At the beginning of December 2007, the Tübingen Department of Ethics in the Biosciences and the “Bioethics” Research Training Group at the Tübingen Interfaculty Centre for Ethics in the Sciences and Humanities (IZEW) jointly organised a workshop looking into the many meanings of “genetic information”. Although the biomolecule has provided many explanations and hopeful projections, opinions are divided over the question of DNA being the carrier of “genetic information”. There is a huge need for clarification.

At the workshop, the spectrum of renowned speakers ranged from biologists, clinicians and psychologists to lawyers and bioethicists. While clinicians and geneticists focused wholly on the therapeutic aspects, psychologists focused more on unintentional complications and the implications of genetic counselling, and lawyers were more interested in the legal regulation of a new problem while bioethicists dealt with the understanding and range of the term “genetic information”.

Predictive genetic diagnostics

Dr. Hildt also alluded to the dark side of predictive genetic analyses. © Prof. Dr. Engels, Department of Ethics in the Biosciences, Tübingen
The bioethicist Dr. Elisabeth Hildt referred to a particular controversy in genetic diagnostics: Although genetic analyses are able to provide useful information in terms of the probability of contracting a certain disease later in life, no information is available on whether patients are actually interested in undergoing predictive testing, and how the results of the analyses should be dealt with. Genetic prediction has catapulted into a new dimension the area of medical responsibility, the issues relating to an individual patient’s decisions about his/her own life and the area of responsibility for subsequent generations. At present, all of this is hard to manage. However, public awareness of the problem might be able to counteract the increasing possibility that these issues will be pushed to one side.

Lack of awareness of problems

Psychoanalyst Prof. Dr. Marianne Leuzinger-Bohleber carried out an international study to investigate whether, and to what extent, prenatal genetic investigations cause pregnant women who are seeking advice to suffer ethical dilemmas and psychological strain. The researchers examined the origin of conflicts as well as the women’s psychological ability to deal with the strain. The study found that a woman’s imagination generated particular effects. The different ways that countries dealt with prenatal diagnostics also showed that it is important to create public awareness and institutionalisation to help the women concerned.

The right of not wanting to know

DNA of a human cell, when spread out, is two metres long. The DNA strand encodes the all the information of an entire organism. © VIB, 2002 - 2008
Despite numerous successes, care must be taken not to overestimate the potential of genetic diagnostics. In many cases, it is not possible to predict the course of a disease as accurately as in the case of the neurodegenerative Huntington’s disease. Volker Obst of the German Huntington Aid (DHH), whose wife suffers from the disease, spoke about this topic. He referred to the compulsory genetic diagnoses carried out on patients on the high-risk list and defended their right of not wanting to know, thereby backing Dr. Hildt’s call for the autonomy of patients concerned to be able to retain an autonomy of decision. Obst’s advice is to take special care when handling genetic data. Despite positive findings and despite the impossibility of predicting the date when a disease may occur, he unequivocally advises those concerned to lead a normal life – living in fear of contracting a disease sometime in the future is hard.

Progress requires regulation

From a medical point of view, there is a positive attitude towards the trendsetting, molecular paradigm. Professor Rieß, human geneticist from Tübingen, pointed out that the new genetic approach enabled more effective and detailed diagnoses. New technologies such as microarrays have already proved their effectiveness. While in the past, specific DNA regions had to be examined, microarray technology enables the analysis of the entire genome. This new dimension of data evaluation raises both ethical and legal questions. Asked about the need for a new genetic diagnostics law, Professor Jürgen Simen, a lawyer from Luneburg, was cautious in his response. Although he feels that it is necessary to put in place new regulations for the handling of sensitive data, at the same time he does not feel that it is necessary to create a separate law. He believes that the health and insurance sector needs to be reviewed: private health insurance companies have agreed not to ask for data on potential genetic risks of insured people until 2011 – but what will happen after 2011?

Problem: ”pictorial” language

Dr. Kovács finds that the term “genetic information” is based on metaphors. © Prof. Dr. Engels, Department of Ethics in the Biosciences, Tübingen
Many speakers referred to the problem of the media using the term genetic information in a simplistic way. Since the Human Genome Project was completed, the general assumption is that this is the only thing that is needed to “correctly read” the genetic “code”, and thus unravel all living beings. The research results of Dr. László Kovács, who did his doctorate in the Tübingen Bioethics Research Training Group, clearly confirmed this. In non-scientific everyday life, genetic essentialism dominates the debate. In 1992, the Nobel Laureate Walter Gilbert, pointed to a CD with a decoded human sequence and said clearly: “This is a human being – that’s me!” This gives the impression that everything can be explained through genes.

Dr. Kovács explained that it was generally assumed that scientists focus on a one-sided presentation of their research and findings in order to gain the support of politicians in the achievement of scientific goals, and that it is actually the scientists themselves who are responsible for this situation. However, he also found a more hidden reason for this: Back in the early beginnings of genetics, researchers found it easier to use metaphors to help people understand what “genetic information” meant due to the lack of precise terminology.

While the terminology has become increasingly clearer in science, it has also stimulated the uncontrolled imagination of the public. In the light of this, it could justifiably be asked whether one should refrain from using such ambiguous terms. However, neither the public nor scientists manage to avoid using metaphors. All the experts agreed on this point. However, as everybody was aware of the difficulties arising from such images, Dr. Kovács asked the scientists to “explain their key metaphors and explain why they used a particular metaphor”. Kovács was sure that this will prevent misunderstandings and will in the long run lead to greater confidence in scientific statements.
The organisers, Dr. Elisabeth Hildt, Prof. Dr. Eve-Marie Engels and Dr. László Kovács of the Department of Ethics in the Biosciences, deserve to congratulate themselves on the high standard of the meeting. Although there were no definitive answers, the meeting and the versatile, interdisciplinary elucidation of the term “genetic information” nevertheless led to greater differentiation and combination of the knowledge of all parties concerned. This workshop can therefore be seen as a role model for successful interdisciplinary cooperation and shows that the views of others contribute to broadening one’s own (disciplinary) borders.

(sS/E) - 02.02.2008
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