Private genes and human heritage
||Genemapping techniques, Policies/Programmes, Bioinformatics,
Intellectual property rights, Relation public-private sector, United Nations
Educational Scientific and Cultural Organization (UNESCO).
||nn. (1999), "Editorial: Private genes and human heritage."
Biotechnology and Development Monitor, No. 40, p. 2-3.
This issue of the Biotechnology and Development Monitor is dedicated
to the science of genetic information. The initiation in the late 1980s
of the Human Genome Project (HGP, see the article by
to sequence the entire human genome not only kick-started a new scientific-technological
endeavour, but also accelerated a paradigm shift in biological research.
Today, most fields of biological research make use of genetic information,
and genomics is heralded as the new life science. Yet the HGP is still
at the forefront of both scientific development and expectations.
Public funding in the USA has largely laid the foundation for this
endeavour. At the same time it has provided the infrastructure for private
companies to develop even more advanced technologies, generating knowledge
that now becomes proprietary information.
The race to sequence the human genome and the claiming of property
rights on the results have turned out to be a mutually reinforcing processes.
At present it is not entirely clear where this claim for Intellectual
Property Rights (IPR) will end; however in the USA the number of lawsuits
regarding sequences of the human genome will certainly increase.
This conflict is symptomatic for an ongoing struggle that is easier
to understand by looking at how the ideas of property and innovation have
developed over the years in information technology on the one hand and
in biological research on the other. In the past, agricultural research
has generally been dominated by public institutions that made their products,
for instance improved crops, publicly available. Today, as pointed out
in the article by Pereira, proprietary knowledge
that is generated in the private sector has gained prior importance for
At the same time, information technology products, especially computer
software, are distributed free of charge. Here, inventors improve products
that are openly accessible and try to gain remuneration, for instance,
for extra services.
At present it seems that genomics is at the crossroads of these two
different approaches towards innovation. This is symbolized by bioinformatics,
which has become an important tool in this new field as the
contribution by Pongor and Landsman describes. Since
genomics relies heavily on information technology, it remains to be seen
which road the proprietary issue will take.
Genomics is expected to spur synergy between the different fields of
biological sciences and some enterprises even claim to integrate it into
a ‘life science’ concept. Yet, even if genomics claims to offer a variety
of unknown technological possibilities, there are more hurdles to cross
before scientific advancement becomes a real product. In the
contribution by Bijman, it is emphasized that technological
synergy is only of secondary importance to marketing considerations.
Another important issue that deserves further consideration is the
concern about patents on human genome sequences. There is worldwide discontent
with the profit-driven appropriation of human genetic information. The
Nations Educational, Scientific and Cultural Organization (UNESCO)
adopted in 1997 the Universal Declaration on the Human Genome and Human
Rights in which it is demanded that "the human genome in its natural
state shall not give rise to financial gains." Instead, the declaration
considers the human genome to be ‘the heritage of humanity’. Even though
this effort to protect genetic information against profit-driven appropriation
is praiseworthy, the underlying ethical implications are questionable;
the genome of every human being is in the first place an integral part
of her or his own body. Protecting this information for preserving ‘the
heritage of mankind’ might well have consequences that are not necessarily
in the interest of the person in whom this genome is embedded. As in the
case of the population of Iceland (see the article on
page 6 of this issue), there are many reasons why people distrust the
examination of their genome. Therefore, irrespective of the property issues
it is doubtful whether human genomes should be considered as genetic resources
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