Universal Bioethics for the Human Germ-line

Journal: in Engineering the Human Germline: An Exploration of the Science and Ethics of Altering the Genes We Pass to Our Children, pp. 139-141 in ed. G. Stock & J. Campbell (Oxford University Press, 1999).
Author: Darryl R. J. Macer
Germ-line engineering and cloning technologies present a challenge to the tolerance of individual and cultural reproductive autonomy that is enshrined in the human right for reproductive choice. While the creation of a child by the assistance of any technology cannot be made a crime, I believe there is a need for international regulation (and education to promote responsible parenting). This is based on several arguments, including, 1) Shared biological heritage and destiny of human beings in all "nations"; 2) The transitory nature of "nations" and the precedents for international law to protect common interests of humanity; 3) The common perceptions and bioethical reasoning of peoples around the world - universal bioethics.

One of the arguments behind international approaches to regulate germ-line gene therapy is that the genome is shared by all people, who have diversified from a common African ancestor (mitochondrial Eve) - over the last 100,000+ years. The germ-line is common property under the international conventions on human rights, and the common heritage concept is enshrined in the UNESCO Declaration on the Human Genome and Human Rights, unanimously accepted by all 186 countries of UNESCO in November, 1997, and by the UN General Assembly in 1998. Another argument based on common future interest, is that people migrate and those with altered germ-lines or born as clones will move across national borders thus the whole world is at potential risk (unless contraceptives are compulsory!).

International guidelines provide some minimum standard. Many nations will not develop their own regulations, and the peoples (present and future) of those countries need to be protected by an international umbrella guideline. Who has ethical interest in protecting the germ-line? National governments may pay health costs, but regional blocks such as the European Union may also take on this role, and international aid already covers vaccination at somatic cell level. Human rights laws are already based in international law. All people have a common interest in the germ-line, so transnational guidelines are desirable, unless we want the appearance of racial hygiene laws to protect the citizens of one country that outlaws germ-line therapy from the reproductive cells of people from the free-market genetic engineering state, transnational guidelines are desirable.

There are already some successful transnational agreements to protect common interest (and innocent parties) from future technological advances - including the law of the sea, the law against ocean dumping, the conventions against biological and chemical weapons, the laws against militarisation of space and the international atomic energy authority, the declarations of human rights (including guidance on reproductive freedom and discrimination) and conventions aimed at combating ozone depletion, and biodiversity. If we protect the commons of the sea, it is not surprising that we have protected the commons of the human genome.

The UNESCO Declaration also includes ban on human reproductive cloning in article 11, which has been a source of debate, but has been generally supported across the countries that have debated it. It raises serious questions of reproductive autonomy however, as it claims the technique is against human dignity. A similar argument is used in the European Bioethics Convention against germ-line genetic engineering. One can really question whether an individual couple's one-off reproductive choice is against human dignity because of one technique of assisted reproduction was used, given the range of techniques that are legally supported.

While it is important to adopt standards that are suitable to each society, such standards should be based on the views of individuals in the society. At present many countries have their own standards, some of which are based on false assumptions of cultural uniqueness. Within a single community one finds divisions on issues of bioethics, such as preimplantation diagnosis and gene therapy, and risk perceptions. However, data shows they may use the same general principles or ideals, which is universalism, sometimes balancing them differently to arrive at different decisions. Universal bioethics does not mean identical decisions; it does mean that the range of decisions in any one society is similar to those found across the whole world. It is also not the same as absolute ethics, saying that there is one correct ethical decision for a given set of circumstances; rather it would say because of love of life and human rights, people in any society should be given some choice over decisions of life. If people are the same then the same standards of bioethics may be applied - universal bioethics, while respecting the freedom of informed choice and responsibilities to society.

The need for discussion of the consequences of germ-line gene therapy and especially for genetic enhancement, is international but many developing countries do not possess resources to have national education programs. The success of cosmetic surgery suggests that once it is possible, the 20-30 percent in developed countries who accept genetic engineering to improve intelligence, physique, or personality, may do so in practice; as will the majority of people in developing countries [see surveys I conducted, in papers and books on-line, http://eubios.info/index.htm"].

The purpose of regulation is to avoid doing harm, loving life. At the same time, loving good also demands us to do good, so genetic therapy curing disease is a good, and those who want to ban it should prove otherwise. Above all, we need to educate people how to exercise informed choices in medical therapy, restricting choice only if this will harm others or society in general. Regulations should postpone the general use of germ-line genetic therapy, reproductive cloning, or enhancement until people can make such difficult decisions more wisely, but the decision is above artificial boundaries of culture or nation.

For the personal question: Would you use an artifical chromosome to increase the lifepsan of your child?

No, I would not use the procedure, because I would want to see the results in reality. If the technique existed, then at least in the lifetime of the child, the technical ability would come to allow the change during his or her life time. Preferbaly they would decide their own fate, that is informed choice and respects their autonomy. If 99 percent of society was performing the change, however, and it was shown to be safe, than I may allow it from the beginning, in the same way as I support vaccination.

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