Local view for "http://purl.org/linkedpolitics/eu/plenary/2001-11-29-Speech-4-007"
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"en.20011129.1.4-007"2
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".
Mr President, Commissioner, ladies and gentlemen, in June last year, President Bill Clinton in the United States and Prime Minister Tony Blair in the United Kingdom presented to the world the map of the human genome, which had been arrived at simultaneously by their respective research groups. A month later
brought the discoveries to the attention of the world scientific community in more detail. In the last few days, we have had news of the first experiment on the road towards human cloning in the United States.
Lastly, another objective that comes into play for the future of human kind is the globalisation of research. It is clear that research requires substantial investment and that financial incentives are indispensable for progress. It is also true, however, that we cannot allow the need for the results of progress to become the undisputed heritage of all human kind, to be sidelined. If we cannot globalise the benefits of our knowledge of the human genome, we can say, right now, we have failed. Science, instead of being a means to create a fairer world, will have helped to widen the gap between rich and poor and will have become yet one more instrument of social division.
In this respect, we must not forget the importance, not to mention the difficulty, of establishing proper, well thought-out patent regulations, the aim being the fair distribution of the benefits among all human beings: here again we see the balance between encouraging initiative and safeguarding human dignity and the instrument for achieving it. Concerned to safeguard human rights in the Member States, the Council of Europe gave precise indications at Oviedo: a ban on any form of discrimination based on genetic inheritance; a ban on interventions on the human genome that go beyond therapeutic purposes; an absolute ban on changing the hereditary genome; and a ban on choosing a baby’s sex. I believe we should uphold these points.
Ladies and gentlemen, there is a series of challenges facing scientists, legal experts, students of ethics, sociologists and those like us in the institutions who have to mark out the new path. I approached the report – a daunting task, and I do not know if I have been up to the job you asked me to do – guided by a principle which, to me, is absolutely fundamental: I did not consider going beyond the point where progress came up against the sanctity of human life, where it started to conflict with respect for human dignity. At this point, I considered it should be progress that should alter its course. One of these alternative courses is now well known: it is a non-destructive alternative, as promising as embryo cell research but using adult cells. I believe we should favour this option since, as well as being promising, it does not involve any kind of ethical or social conflict.
Respect for human dignity, in the context of biomedical research, implies that science should serve the people and not the other way round. All human beings must be protected at all stages of their lives, from conception until natural death, particularly if they are vulnerable or disabled. I am in favour of progress in scientific research, not least because it is a source of economic development, but I believe we have to ensure that it does not become a kind of death trap for human beings because due attention was not paid to the ethical principles that should underlie it.
Finally, I would like to thank all those who have collaborated on my report.
As often happens with day-after prophecies, voices are now being raised in alarm, unanimously expressing the most indignant condemnation and concern. The researchers themselves recognise that they have shown the way to those who might want to commit the folly of cloning a human being.
These are two historic moments: little more than a year has passed between one and the other but it almost seems as if we are talking about two different periods in history. Beyond the concerns for the future, however, I think it is true to say that between these two historic moments a new approach to medicine emerged: curative medicine is giving way to a regenerative form of medicine oriented towards prediction. In the not too distant future, we shall probably be in a position to predict the diseases we are likely to suffer from and, more importantly, we shall be able to find ways of preventing these diseases from actually developing.
Two opposing paths thus open up, as often happens in the history of human discoveries: on the one hand, there opens the wonderful road of therapeutic hope; on the other, there lies the grim borderline with the ethical horror of human cloning. We, therefore, have the paradoxical task of setting limits in the vast reaches of the unknown that lies before us.
This is the greatest project of the new century and involves the whole of human kind. As people became aware of this, a need was felt to set up discussion groups to keep an eye on the ethical, social and legal implications of the new research programmes. The extraordinary possibilities of scientific and medical progress, seen in the light of its inherent potential, have indeed suddenly made alarm bells ring. It is this fear that drove Unesco to set up a bioethics committee to study the social implications of our knowledge of the genome, and that led, in 1997, to the approval of the Universal Declaration on the Human Genome and Human Rights. Then the broad consensus reached by the Declaration led the United Nations General Assembly to commemorate the 50th anniversary of another vitally important document, the Universal Declaration of Human Rights, by adopting the Unesco Declaration on the genome.
I have the feeling, however, that, when we get down to the details of the regulation, some of the principles that we have upheld so strongly dissolve away inexplicably. Although I am aware that this is a vast subject, I shall try to sum up the effects of the project on human rights and the dignity of human beings, which, of course, underlie our report. I shall summarise in four objectives the attempts and commitment to reconcile the longed-for progress of science with absolute respect for the sanctity of human life.
The first thing that stands out is the progress made in experimental genetics for the purpose of gaining therapeutic benefits. Using our knowledge of the genome as a starting point, clinical experiments are then required. Medicine itself shows that a moment always comes when such experiments have to be carried out on human beings, and so it is clearly necessary to take every step to ensure the safety of the patients experimented on, so that there is no risk to their health or, indeed, their life, and free and informed consent must always be obtained.
Secondly, from the little information we now have, it is true to say that our knowledge of the genome might enable us to mutate our genes. It is therefore absolutely essential to indicate, as from now, which doors we must never open. Here, I return to the Universal Declaration on the Human Genome and Human Rights, which bans interventions on the genome that affect the germ line. The events of recent days seem to me not to have taken this direction. Furthermore, knowledge is in a continuous state of flux and requires constant monitoring. From the information we have, the only certainty we can hang on to is the fact that embryos are human, whatever their fate may be.
Thirdly, the doors opened by our knowledge of the genome lay us open to a serious risk that our privacy will be violated as a result of this very knowledge. We must be able to ensure that information derived from the knowledge of our genetic make-up cannot reach operators other than those who will use it for our own good. It is clear, indeed, that if it were possible to access information on the propensity of a particular person to a particular disease, we would be leaving ourselves open to a new source of discrimination, in the field of work, for instance, and elsewhere. We must be aware of this risk and of the need to take steps to prevent it."@en1
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