The consensus on two specific issues raised by genetic advances
- Biomedicine and international human rights law: in search of a global consensus
The emerging global consensus on bioethics is clearly minimalist. When addressing these sensitive issues, international instruments do not pretend to provide a precise and definitive answer to the most intricate questions posed by medicine and genetics. On the contrary, international bodies tend to lay down very general principles like the requirement of informed consent, the confidentiality of health information, the principle of non-discrimination for genetic reasons and the promotion of equity in the allocation of resources in health care, especially to meet the needs of the most disadvantaged populations.
The importance of setting general principles relating to biomedicine should not be understated. General international standards, far from being purely rhetorical statements, may constitute a first step towards promoting more concrete regulations at a national level. It should not be forgotten that national governments, not international organizations, are the primary agents for the realization of human rights.
In any case, the international consensus is exceptionally precise on two specific issues, because it aims to prevent some potential developments that raise the most serious concerns for the future of humanity: germ-line interventions and human reproductive cloning. The lawmaking process, which is usually accused of being too slow to keep up with scientific advances, has on this occasion overtaken science, because legal provisions are being adopted to prevent two technologies that do not yet exist.
The ethical reflections on germ-line interventions usually stress the fact that, unlike alterations of genes in somatic cells, which affect only the treated person, any alteration in germ cells (gametes) or in early embryos before the stage of differentiation would be passed to the next generation. This distinction has serious moral relevance: although somatic cell gene therapy does not raise specific ethical questions, insofar as it does not serve an enhancement purpose, germ-line interventions, given their irreversible effects on future generations and their possible misuse for eugenic purposes, pose unprecedented concerns. This is why most ethical and legal regulations that cover this issue strongly discourage or frankly prohibit this procedure.
At the international level, UNESCO Universal Declaration on the Human Genome and Human Rights provides that germ-line interventions "could be contrary to human dignity" (Article 24). Similarly, the European Convention on Human Rights and Biomedicine states that "an intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants" (Article 13).
At the national level, some legal provisions and guidelines that ban germ-line interventions have already been adopted by some countries — mostly developed countries (18). This latter circumstance is not surprising, because human genetic engineering would be possible only where the financial, human and technical means were available. In contrast, developing countries have more urgent problems to solve — such as improving access to basic health care services — before worrying about human genetic engineering. Nevertheless, some developing nations, such as Brazil and India, have also adopted ethical and legal standards on this issue (Brazil Law 8974/95) (19). This is probably due to the mixed situation of these countries, in which a high level of poverty and social inequity coexists with remarkable scientific and technological developments.
With respect to objections to germ-line genetic engineering, it is important to note that they are of a different nature, depending on the purpose of the intervention.
In the case of germ-line interventions for therapeutic purposes — that is, for preventing the transmission of diseases — if we leave aside the controversy on embryo research, the objection is not based on intrinsic ethical arguments, but on the risks of serious and irreversible harm to future generations (20, 21). In addition to this, it is important to recognize that the idea of eliminating "harmful" genes from the entire human population is more utopian than real. Such a global result, if ever possible, could only be realized over thousands of years and with recourse to massive coercive programmes, which would be morally unacceptable (22).
In the case of germ-line interventions for enhancement purposes, the objections are more fundamental and are based on the idea that we do not have the right to predetermine the characteristics of future individuals. That means that people should be free to develop their potentialities without being biologically conditioned by the particular conceptions of "good" and "bad" human traits that were dominant at the time of those who preceded them. In other words, genetics should not become the instrument for a kind of intergenerational tyranny (23–25). A second objection is that the procedure would profoundly affect our own self-perception as "subjects" — that is, as autonomous beings — which might lead us to consider ourselves as mere "objects" or biological artefacts designed by others (22, 26).
Human reproductive cloning
Since the announcement that a sheep had been successfully cloned from the cell of an adult animal in 1997, concern about the possibility that the same technique could be applied to produce genetically identical human beings has been widespread.
In the debate on human cloning, it is usual to make a distinction between "reproductive cloning" and "therapeutic cloning" In the first case, the embryo obtained by the cloning procedure is transferred to a woman's uterus; this begins a process that eventually may lead to the birth of a baby genetically identical to the cell donor. In the second case, the embryo's inner mass is harvested and grown in culture for subsequent derivation of embryonic stem cells that may have therapeutic applications in the treatment of serious degenerative disorders, such as Alzheimer's disease or Parkinson's disease. Although the consensus at the political level is that human reproductive cloning should be banned, no agreement about the ethical acceptability of therapeutic cloning has been reached. In this respect, some have argued that the creation of embryos by cloning for the derivation of stem cells offers such significant potential medical benefits that research for such purposes should legally be permitted (27). Others consider that only embryos that remain after in vitro fertilization procedures should be used for that purpose, because they will be discarded anyway (28). Still others are opposed to the use of either cloned embryos or "spare" embryos from in vitro fertilization procedures, on the grounds that any deliberate destruction of human life is ethically unacceptable (29). It is evident, therefore, that the value we attach to human embryos remains the key issue in the debate on therapeutic cloning.
At the international level, the most recent initiative aimed at preventing human cloning was taken in December 2001 by the United Nations General Assembly, when it established the Ad Hoc Committee on an International Convention against the Reproductive Cloning of Human Beings (30). This initiative was a response to the request of the French and German governments to the United Nations to approve a worldwide ban on human cloning. The Committee met twice in New York, once in February and once in September 2002 to start the convention process, which is expected to conclude in 2003. The central issue, which remains unsolved, is whether the convention should ban only reproductive cloning or whether it should also include the creation of cloned human embryos for therapeutic purposes.
Other important international instruments that ban (mainly reproductive) human cloning have been adopted by UNESCO, the Council of Europe, the World Health Organization (WHO resolutions WHA50.37 (1997) and WHA51.10 (1998)), the World Medical Association, the European Union and the European Parliament (3, 31–36).
At the national level, many countries have passed provisions that prohibit human reproductive cloning, including France, Germany, Japan, Peru, Spain, Switzerland and the United Kingdom (18).
On the other hand, it is also helpful to consider the arguments, mainly based on utilitarian reasons, put forward in favour of reproductive cloning. Cloning would allow infertile couples to have children who are biologically related to one of the parents and couples who are known carriers of genetic diseases to have children not affected by the risk of such disorders (37). It would allow individuals to "replace" someone of special value to them — such as a child who died prematurely (37). There would be a "right to procreative autonomy", which would include reproduction by cloning (38, 39). Finally, cloning would allow families or society to reproduce individuals of great genius, beauty or exceptional physical abilities.
Most of the objections to human reproductive cloning are based on the idea of human dignity. Cloning would give the creators unjustifiable powers over clones produced deliberately to resemble an existing individual (or even a dead person) just to satisfy the desires of third persons. In this way, this procedure would become a new and radical form of instrumentalization of people (40, 41). Although human beings cannot be reduced down to just their genes, the fact is that, given their physical similarity to the "original" and to each other, clones might seem like replaceable "copies" rather than irreplaceable originals (42). Cloning is not just another assisted reproductive technology — the cloned child would be without genetic parents and therefore would be irrevocably deprived of the possibility of relating his or her existence to a "father", a "mother" or a "family" in the normal sense of these terms (43–45). Finally, even on purely scientific grounds, human reproductive cloning is considered to be a dangerous procedure: data on cloning of animals shows that only a small percentage of attempts are successful, that many clones die during gestation and that newborn clones are often abnormal or die. Such devastating consequences in humans make the procedure ethically unacceptable (46).
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