Global governance in genetic, genomic, and proteomic databases: a right to privacy against a societal good
Ever since the mapping of the human genome, the amount of human genetic data now being collected has been called a tidal wave of data. Such data is being stored with the principal aim of using such data for research, primarily in genetic diseases, but not exclusively. Such databases become more powe...
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| Format: | Article |
| Language: | English |
| Published: |
2017
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| Online Access: | https://dialnet.unirioja.es/servlet/oaiart?codigo=6178803 |
| Source: | Rights and Science: R&S, ISSN 2531-1352, 2017, pags. 15-22 |
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| Summary: |
Ever since the mapping of the human genome, the amount of human genetic data now
being collected has been called a tidal wave of data. Such data is being stored with the
principal aim of using such data for research, primarily in genetic diseases, but not
exclusively. Such databases become more powerful when they are linked, because of
the increased number of DNA sequences that can be searched. However, this provides
for significant problems of management and governance of these databases, not least
because they hold genetic information on identifiable individuals and therefore, there
has to be control over access to these databases. But, beyond such issues lie a number of
legal problems which relate to patients’ rights and patients’ duties to society and
medical research; questions of ownership, not only of the databases themselves, but also
the genetic information stored in such databases, particularly with the issues related to
intellectual property rights. This brief paper examines the need for governance of such
databases, principally through soft law techniques of international regime analysis. |
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