The Frankenstein mentality

Published on November 22, 2004

Story by

alice desthuilliers

Translation by:

vicki bryan

Debate on the ethical limits of science has become a necessity. That lawmakers have been taking an interest in the possible scientific and commercial consequences of developments in biotechnology, also known as bioscience, can only be a good thing. On the multilateral stage, UNESCO adopted the Universal Declaration on the Human Genome and Human Rights on November 11th 1997, which was then followed by the International Declaration on Human Genetic Data on October 16th 2003. By providing the framework for new and universal legislation, these two declarations gave priority to the respect of people and their individual rights over advances in research. This is how the situation stands for the world in general.

Each country makes its own laws

Always at the forefront of developments, the European Commission set up the European Group on Ethics in Science and New Technology (EGE) in 1997 as the successor to the pioneering Group of Advisers on the Ethical Implications of Biotechnology. The EGE, which is made up of a group of independent experts, delivers opinions on the Community’s research policy. It has worked on the issues of embryos and human tissue and the use of stem cells. This year, the group has tackled biomedical ethics in the new Member States, umbilical cord blood banks and the marketing of products resulting from the engineering of human tissue. The European parliament also set up a group, albeit a short-lived one, to tackle such ethical questions: the Temporary Committee in Human Genetics and Other New Technologies of Modern Medicine.

However, it is up to each country to define its own playing field and declare what is permitted and what is not concerning morals, ethics and its own scientific requirements. When cloning first came about, legislators dealt with the most pressing issues that it raised. Not wanting to be seen as the ‘censor of technological progress’ (or even out of fear, perhaps), the law set itself up as the custodian of ‘good bioscience’. Most of the EU Member States made human cloning illegal. In the United Kingdom, where the technology is very advanced, introducing an embryo that is not the result of natural fertilisation into a woman’s womb is considered a crime, punishable by 10 years in prison. And yet creating human embryos purely for reasons of research, which is condemned virtually everywhere else, is authorised in the UK under certain conditions.

The prime concern of lawmakers, scientists and civil society has been to agree on a definition of an embryo. This varies from one country to the next. In Ireland, for example, the embryo does not receive legal recognition, rather it’s the idea of the ‘unborn’ that prevails. In Finland, the embryo is defined as a collection of cells that is the result of fertilisation and is in vitro (outside the womb, e.g. in a test tube); an embryo that is in vivo (inside the womb) is known as a foetus, no matter its stage of development, the same as in the Netherlands.

Draconian conditions

Once each country had defined what it believed an embryo to be, laws were drawn up, mainly to meet the requirements of assisted reproductive technologies (fertility treatment), and then later on for research. Embryo research for therapeutic reasons is generally allowed, except in Ireland and Portugal, where it is classed as unconstitutional. Elsewhere, it is subject to severe limitations – in general, the permission of the gamete donors or the parents is required; the embryo must be used within 14 days of development, not including the period of freezing; the research report must be submitted to a recognised and patented scientific establishment; and all forms of eugenics is banned. Therapeutic research that does not offer direct benefits for the embryo is also allowed in Belgium, Finland, France, the Netherlands, Spain, Sweden and the United Kingdom. This type of research covers issues such as infertility, congenital illnesses, and contraception. Spanish law stipulates that this type of research must not be carried out on embryos that come from voluntary abortion; in Sweden, surplus embryos from fertility treatment may be used for this type of research; and in France, this research can only be carried out with permission from the Minister for Health and the committee on bioethics.

The new Member States are not to be outdone in this area. Slovenia has had a committee on bioethics since 1977, Malta and Hungary since 1989 and, more recently, Estonia and the Czech Republic have set up their own committees, in 1998 and 1997 respectively. These countries also have fairly comprehensive legislation in this area. Among the most advanced of the new Member States are Slovenia, which has a veritable ethical and legislative arsenal on therapeutic cloning, placebo usage, brain death and organ donations, and Poland, which has legislation on biomedical embryo experimentation, prenatal testing and human cloning.

Self-regulation

Laws in the United States differentiate between those research programmes which are entitled to receive public funding and those which are not. On August 9th 2001, President George W. Bush decided to authorise funding for research using existing stem cell lines. These cells are taken from supernumerary embryos that have been donated to scientific research by the parents. But, for its part, the Chamber of Representatives voted in a text banning and criminalising all human cloning on July 31st 2001. Closer inspection of national and international legislation reveals that these ‘laws’ actually only accompany, or merely serve as a framework for, a general trend in a world that is increasingly ‘self-regulating’, or even ‘self-procreating’. Loopholes in these laws can be exploited because the wording is often evasive. ‘Evolution’ is on the move. But is it out of control?

Story by

alice desthuilliers

Translated from Le syndrome Frankenstein