Professor Nils Hoppe has an article in BioNews that I recommend you read. It begins:
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). The driver behind this discussion is essentially the same as that in the context of medical confidentiality taken by the Court in X v Y , succinctly summarised in that judgment by Rose J:
[i]n the long run, preservation of confidentiality is the only way of securing public health; otherwise doctors will be discredited as a source of education, for future individual patients ‘will not come forward if doctors are going to squeal on them‘. (my emphasis). (1)
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.
Read the full article on BioNews. He raises a lot of really important questions that do need to be debated and addressed.