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LEGAL THINKING ABOUT OUR EDITED SELF
Oviedo Convention, which bans sex selection: "Ihe use of technigues of medically
assisted procreation shall not be allowed for the purpose of choosing a future
child’s sex, except where serious hereditary sex-related disease is to be avoided.”
The other normative anchor is to examine the purpose that such an intervention
could serve. Although it is difficult to establish it legally, it is important to define
the difference between a disease to be cured and an anomaly. Who decides
about what is considered a disease or an anomaly, and which diseases are worth
correcting, treating and improving?
Enhancement and performance enhancing have become accepted in many
fields; it is enough to think about the improvement of vision through eye surgery,
or the numerous — legal and illegal — means of performance improvement in sport.
Julian Savulescu and his colleagues believe that most of the leading athletes
are born with a genetic advantage; consequently, they claim that genetically
enhancing athletic performance is completely legitimate, as elite and competitive
sport above a certain level is all about competition between genetic advantages
anyway.” Obviously, diligence and a lot of training are essential but, according
to Savulescu, in this case, genetic intervention in order to enhance performance
can be justified.
THERAPY OR ENHANCEMENT?
During the application of new procedures, one of the most controversial topics is
how to set the boundaries between therapy and enhancement. Russian biologist
Denis Rebrikov, for example, offered his help in gene editing to allow deaf
couples to give birth to children without a genetic mutation that impairs hearing.
Rebrikov emphasized that he will implant gene-edited embryos only if he receives
regulatory approval. The community with hearing disability, nevertheless, may
regard this offer as an indication that their identity needs to be gene-edited. For
them gene editing may be regarded not as a desirable therapy but rather a form
of intervention that emphasizes their disability. On the other hand, those who
advocate for enhancement of different capabilities in sport and other fields of life
may welcome gene editing as a form of enhancement.
According to a survey on gene editing, conducted by the Pew Research Center
in 2018, 54% of respondents thought that people will use gene editing in morally
unacceptable ways. Furthermore, about seven-in-ten Americans (72%) were on
the opinion that changing an unborn baby’s genetic characteristics to treat a
serious disease or condition that the baby would have at birth is an appropriate
2 Francoise Baylis, Altered Inheritance, Cambridge, MA, Harvard University Press, 2019, 58.
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