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LEGAL THINKING ABOUT OUR EDITED SELF
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JUDIT SÁNDOR!"
THE AGE OF BIOTECHNOLOGY
The first draft sequence of the human genome was reported 20 years ago in the
scientific journals Nature? and Science.* Back then, in 2001, the 21st century
was already being heralded by many, optimistically, as the century of biology.
Nevertheless, unlocking the secrets of the human genome has brought not only
scientific success but also numerous ethical issues. We also reached a new phase
of the textuality of genetics, as we use letters to describe gene sequences, and
scientists refer to the codes obtained this way and eventual mutations using letter
codes. This marks the beginning of genetic literacy as well.
The term eugenics was used by Francis Galton as early as in 1883.* It has gained
several connotations over time and has been misused in ways that led to great hu¬
man tragedies, but it was also seen by many as a positive step. Since the beginning
of the 20th century, though in different waves, sometimes wandering astray and
with numerous detours, human genetics has been growing vigorously and, thanks
to the Human Genome Project, it has influenced almost all areas of medicine.
In human imagination, fantasy and literature, artworks related to this topic,
and which still shape our thinking, genetic interventions had appeared long before
modern genetics started to flourish. The first example to mention can be Mary
Shelley’s Frankenstein, written in 1818, which still serves as a reference in ethical
debates. Since then, all irresponsible experiments on human subjects have been
associated with the term ‘Frankensteinian’.
Huxley’s Brave New World, his modern classic that has been translated into many
languages, was published in 1932. The list may be continued with the “Geneticists’
Professor at the Faculty of Political Science, Legal Studies and Gender Studies of the Central
European University (CEU)
International Human Genome Consortium, Initial Sequencing and Analysis of the Human
Genome, Nature 409 (2001), 860-921.
3 Craig J. Venter —- Mark D. Adams — Eugene W. Myers — Peter W. Li — Richard J. Mural et
al., The Sequence of the Human Genome, Science 291 (2001), 1304-1351.
: Nicholas W. Gillham, Sir Francis Galton and the Birth of Eugenics, Annual Review of
Genetics 35 (2001), 83-101.
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