The full text of the joint statement follows. Attention is drawn in particular to section C.5, which rejects the view that human germ line modification will necessarily violate human dignity. In the view of participants, "The so-called right to be born with a human genome that has not been modified by artificial means, was not recognized here as being a clear and a compelling right."
A list of the names and cities of the participants who support the statement is provided below. For additional information, contact Prof. dr. Guido Van Steendam, director IFB, Craenendonck 15, 3000 Leuven Belgium; +32 16 23 11 74. guido.vansteendam@biophilosophy.be.
TEXT OF THE STATEMENT:
Title: Improving the way society can handle itself and the science it generates: The Ethics of Inheritable Genetic Modifications in Humans
Text: The prospect that Inheritable Genetic Modification (IGM) in humans might sooner or later be possible is the subject of a growing number of publications in the media and popular press, of intensified activity of social sciences and bioethics and of ongoing attention from policy makers.
The ethical issues surrounding these developments were addressed during the first international Expert Meeting in Europe on this topic, convened by the International Forum for Biophilosophy (IFB) in Brussels on 6-8 December 2002. The meeting was based on a preparatory study carried out by IFB and drew upon the results of the AAAS working group on IGM.
At the end of the meeting, a panel of leading experts from biological and social sciences, interacting with representatives from the public at large, made the following summary of their view on the current situation of the ethics of IGM in humans and of the priorities for research and action.
Where are we now?
A. Inheritable Genetic Modification in humans is no longer a science fiction scenario. It would be feasible although inefficient and unsafe now, but is expected to be safe and effective in the foreseeable future if current research efforts are continued.
The techniques already work in a range of animal models.
There is now proof of concept that somatic gene therapy can be used for clinical purposes in humans.
Some of the technical problems affecting somatic gene modification do not affect IGM if this is performed on the fertilized egg or human stem cells.
Techniques for modifying a number of genes simultaneously exist for use in animals, and these techniques may be transferred for the treatment of polygenic diseases in humans.
Progress in targeted IGM means that the side-effects of random gene insertion (cancer risk etc.) may be avoided.
Developments such as the DNA chip will enable optimization of choice of vector for somatic gene modification. It also makes Pre-implantation Genetic Diagnosis possible for many conditions, and will make it possible to test for the correct insertion /modification of genes within the context of IGM.
A form of IGM already occurs when mitochondrial genetic defects are treated within the context of in vitro fertilization with cell nuclear transfer or exchanges of cytoplasm.
The possibility cannot be ruled out that inadvertent inheritable genetic modification may already occur at a low level in somatic gene therapy trials, but neither society at large nor the scientific community sees this as a reason to stop these trials.
B. The world's religious traditions generally support the therapeutic goal of IGM. While many religious people and theologians also support the goal of enhancement, others categorically reject it.
Among the religions, a consensus on the moral status of embryos does not exist. Many Christians, however, oppose any instrumental use of the human embryo, and some oppose any treatment of the embryo in vitro. This opposition results in a clear rejection of most experiments that are currently carried out to develop the technology of IGM in humans. It may also result in the rejection of some scenarios involving the use of human IGM.
C. Five major social commitments bear upon the discussion on reproductive medicine and IGM in humans.
1. The promotion of human health
This broad social concern is a major drive to promote genetic modification (GM) and to explore the possibilities of IGM.
As mentioned above, IGM is currently unsafe. More research is needed if society wants to proceed with IGM.
No reasons have been identified for stopping research that may sooner or later lead to a safe and effective application.
2. The promotion of social life
3. The fair distribution of social wealth, including of access to medical technologies
As to therapeutic use, medical practice should be organized to promote equal access.
It remains a topic of discussion whether access to uses that are closer to enhancement should be controlled by public policy or left to the mechanisms of the free market.
4. A fair decision making process
This implies good information and communication as well as the informed participation of all relevant stakeholders in different ways of decision making.
5. The promotion of meaning and meaningful life
No interpretation of human dignity has been identified that stands in the way of the development of IGM.
The so-called right to be born with a human genome that has not been modified by artificial means, was not recognized here as being a clear and a compelling right.
We encourage the development of a society that promotes open, responsible thinking and open, responsible action, accepting the possible contribution of science and technology, including genetics, while avoiding the reduction of human problems to scientific problems and avoiding the "genetic fix".
Priorities for further research and action
The panel identified the following priorities for research and action:
1. Contemporary society is marked by much distrust and anxiety, including a fear of the results or potential results of science and technology. One of the major factors contributing to this situation is the different way in which different actors and stakeholders perceive the risk associated with the work of scientists. There is an urgent need for an in depth analysis of this difference in risk perception;
2. Contemporary society strongly condemns discrimination and develops mechanisms to ensure equal access to health care. As mentioned above, exactly what should be included in the equal access that is provided and why, remains a topic of discussion. Knowing that IGM will provide a variety of possibilities, ranging from purely therapeutic to pure enhancement, an urgent need exist to study the ethical aspects of access in this context;
3. The development of an open and wise society requires different levels of involvement in decision making, from being informed and having the possibility to react, to being consulted and having the power to make the actual decision. An urgent need exists for a detailed study of the tools and mechanisms that allow actors at each level to respond thoughtfully and effectively to opportunities and challenges, based on adequate and analytical information;
4. There is still a continued need to improve communication about developments in genetics and in the ethical and social analysis of genetics. Improved mechanisms of information not only can remove undue fear, but can also generate better information about the possibilities of genetic technologies and about the real ambiguities that can or should be addressed by the public or ethical and social research. The panel recognizes the need to increase public awareness of genetics by including genetics in primary or secondary educational programmes. The panel also underlines the urgent need to create a dedicated web portal that provides structured access to relevant information resources, bibliographies, grey literature, web sites and electronic discussion forums.
The statement has been drafted by an Expert Panel consisting of: Johan Braeckman (Ghent), Axel Buyse (The Hague), Marinee Kim Chuah (Leuven), Ronald Cole-Turner (Pittsburgh), Willy De Greef (Basel), Frank Demeyere (Brussels), Søren Holm (Manchester), Uwe Maskos (Paris), Albert Moraczewski (Boston), Ferenc Oberfrank (Budapest), Guido Pennings (Brussels), Ysbrand Poortman (Soestdijk), Thierry Vandendriessche (Leuven), Guido Van Steendam (Leuven), Willy Weyns (Brussels) interacting with Stephanie Albers, Heidi Allemeersch, Gerda De Coster, Griet De Vriese, Dirk Draulans, Marleen Finoulst, Wim Hellemans, Janko Jatidjan, Pieter Luypaert, Trees Rambour, Guido Van Poucke.
All views expressed during the meeting or described in this summary represent the critical and thoughtful views of the individual participants of the meeting on the current state of the debate. They do not necessarily represent the views of the institutes to which the participants are affiliated or linked.
Acknowledgement. This research was co-funded by the Technology Assessment programme of the VIB, Flanders