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OCR
LEGAL THINKING ABOUT OUR EDITED SELF How DoEs GENE EDITING REWRITE THE STRUCTURE OF ETHICAL DEBATES? Legal and ethical reactions to the latest transformation technologies have changed since the foundation of the Human Genome Project. First of all, reactions are no longer delayed, but mostly happen in parallel or, in the case of cloning, even anticipating the scientific possibilities. This is necessary, because cloning or gene editing has created opportunities that cannot be corrected if implemented prematurely. The possibility of human cloning, for example, impelled legislators to introduce regulations banning cloning as early as in 1997, although the technology and successful implementation were far from being available then. The second important difference is that society today participates much more actively in shaping expectations, hopes and rejections of biotechnology, and several works of art, movies and literary pieces provided utopian or dystopian visions and predictions, some of which have already become reality. As all of this affects our thinking, law and ethics try to provide answers, and in many cases, they anticipate the changes in biotechnology. In the case of gene editing, it was Jennifer Doudna who drew the public’s attention to the widespread social implications of gene editing.*® She is the model of the responsible scientist in the 21st century. Earlier, it was not appropriate for scientists to share their doubts with the public. Instead, they were expected to behave as if they were successful and infallible. To put it simply, there are two very contrasting perspectives in ethical debates: there are those who argue for the sanctity of life, which cannot be altered, and the others who support the individual’s decision and autonomy. The fact that the embryos that would not have gained a chance of life without the intervention of gene editing now can be implanted encourages pro-life advocates to support gene editing, because this way may give a chance of life to embryos and fetuses with serious diseases. However, this goes against the usual combination of protecting life and refusing interventions. A challenging intervention might save potential lives. The concept of autonomy is also difficult to define in gene editing procedures. Whose autonomy are we talking about? The autonomy of the pregnant woman, the unborn child, the parents? It is important to highlight that one’s genes are not one’s fate, and personality is not determined by any single gene. The interests and viewpoints of families affected by genetic diseases have to be respected. Extreme 26 Robert Sanders, CRISPR Inventor Calls for Pause in Editing Heritable Genes, Berkeley News (1 December 2015), https://news.berkeley.edu/2015/12/01/crispr-inventor-calls-for-pausein-editing-heritable-genes/. * 355 *
