Privacy, trust and rarity
The second main objection focuses on the patient's privacy interests (5), p. 108). It is therefore of great importance that it appears possible to de-identify the information, so that it no longer needs to reveal who in the family had this genetic disposition confirmed ((16). If information can be de-identified, privacy concerns make for a less than persuasive argument. Sometimes it may still be impossible, but in such situations, with the exception of extraordinary cases (as, for example, is the case with the right to access your own medical records), the interests of the relative concerned should take precedence. The reason is that the patient is not the sole owner of this information, and should accordingly not be the only one to decide over it.
Trust, however, is closely associated with privacy concerns. A minority of the Norwegian Biotechnology Advisory Board believed that the opportunity to seek out relatives against the patient's will could undermine the relationship of trust between doctors and patients (6), and trust is an obvious argument for tipping the scales in the patient's favour. The duty of confidentiality is deeply embedded in professional ethics, for good reason. This notwithstanding, exceptions are permitted even today; the duty to notify the child welfare service is an example. Trust can also be regarded in the opposite way: relatives can lose their trust in the health services if information is deliberately withheld (9, 10). In response to this, it can be asserted that if it becomes known that information can be shared with relatives against the patient's explicit wishes, the use of private services is likely to increase (17). On the other hand, if the arguments in favour of permitting this are accepted, a change in the law will result in more, not less, trust in the public services. The belief that permitting such access is contrary to the general consensus is an implicit premise in the counterargument.
In this context it is interesting to note that rarity is often emphasised. The quote from the preparatory works of the Act and the statement from the Norwegian Biotechnology Advisory Board above both refer to the probable rarity of a situation where the requirements in Section 5–9, fifth paragraph, of the Biotechnology Act have been met and the patient is unwilling to inform any relatives concerned. Apparently, this is used as a counterargument. It remains unclear why rarity should be an argument against changing the law. Quite the reverse, it is less intrusive to amend the Act if the situation is a rare occurrence. Both privacy concerns and trust thus seem to be less critical. Moreover, resource arguments become less credible, although the rate of occurrence has no impact on the legal principle.