More on International Standards for Genetic Data

I blogged last week that UNESCO was set to release their International Declaration on Human Genetic Data, and they have

GenomeWeb reports on the declaration here.

Relevant excerpts from the declaration:

…It is ethically imperative that human genetic data
and human proteomic data be collected, processed, used and stored on
the basis of transparent and ethically acceptable procedures…

…Human genetic data, human proteomic data and biological samples
linked to an identifiable person should not be disclosed or made
accessible to third parties, in particular, employers, insurance
companies, educational institutions and the family, except for an
important public interest reason in cases restrictively provided for by
domestic law that is consistent with the international law of human
rights or where the prior, free, informed and express consent of the
person concerned has been obtained provided that such consent is in
accordance with domestic law and the international law of human rights.
The privacy of an individual participating in a study using human
genetic data, proteomic data or biological samples should be protected
and the data should be treated as confidential…

…Human genetic data, human proteomic data and the biological
samples collected for one of the purposes set out in Article 5 should
not be used for a different purpose that is incompatible with the
original consent, unless the prior, free, informed and express consent
of the person concerned is obtained according to the provisions of
Article 8(a) or unless the proposed use, decided by domestic law,
corresponds to an important public interest reason and is consistent
with the international law of human rights. If the person concerned
lacks the capacity to consent, the provisions of Article 8(b) and (c)
should apply mutatis mutandis…

…States should regulate, in accordance with their domestic law and
international agreements, the cross-border flow of human genetic data,
human proteomic data and biological samples, so as to foster
international medical and scientific cooperation and ensure fair access
to this data. Such a system should seek to ensure that the receiving
party provides adequate protection in accordance with the principles
set out in this Declaration…

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