One of the legally and ethically problematic issues regularly debated in the context of biobanks and tissue repositories is that of its potential for forensic use. When Anna Lindh (the Swedish foreign minister) was murdered in 2003, her killer was subsequently identified by way of matching DNA traces found at the crime scene with data contained on the killer’s Guthrie card (an archived heel blood test done on every child born in Sweden). This was an elegant and inspired forensic move by the prosecuting authorities in Stockholm, but it led to frantic debate in the relevant scientific communities about whether mechanisms ought to be developed that restricted such use in the future.
The rationale for this discussion was not what one might first suspect it to be: it was not driven by a desire to strengthen individuals’ informational self-determination, or a sign that genetic information was in some way instantly recognised as particularly volatile and needing additional protection (though the jury is still out on that particular question).
This is, in essence, a consequentialist public health argument. It is not about protecting the privacy or augmenting informational self-control of individuals, but about providing stability and coherence in the system. If the information is not safe in the system, I will not give my information to the system. This would have disastrous consequences for the provision of clinical care to the benefit of everyone.
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The same can be said about the post-Lindh discussion about forensic access to research infrastructures storing genetic information. If it becomes commonly known that biological material and genetic information entrusted to researchers might be subsequently used to match me, or a close relative, to the scene of a crime, it is clear that less material would be provided to research. This would have disastrous consequences for the generation of research knowledge to the benefit of everyone.
Read full, original article: Squealing on DNA: the law and secondary use of genetic information
