I am a strong supporter of privacy and civil liberties. But I confess I don’t get the opposition to this rule, just promulgated by FDA on an expedited basis, without going through public comment:
In a public health emergency, suspected victims would no longer have to give permission before experimental tests could be run to determine why they’re sick, under a federal rule published Wednesday. Privacy experts called the exception unnecessary, ripe for abuse and an override of state informed-consent laws.
Health care workers will be free to run experimental tests on blood and other samples taken from people who have fallen sick as a result of a bioterrorist attack, bird flu outbreak, detonation of a dirty bomb or any other life-threatening public health emergency, according to the rule issued by the Food and Drug Administration.
In all other cases, the use of an experimental test still requires the informed consent of a patient, as well as the review and approval of an outside panel. (AP via MSNBC)
Three privacy experts are quoted in vigorous opposition. At least two of the three take a consistent conservative libertarian position. The third seems to be fixated on medical privacy. I consider myself a socially left libertarian but I cannot understand the reasoning in opposition to this, which seems excessively doctrinaire, inflexible and relying on a slippery slope absolutism. It is true that there is absolute discretion on the part of the testing laboratories in deciding on what constitutes a life-threatening emergency, but it is harder to see the potential for abuse. If it is stretched to include non-emergency situations (e.g., to develop a commercial testing product) then the patient has a course of action under civil remedies. If they are never told their blood has been used for this purpose they have been unfairly exploited in some sense but not significantly harmed.
In a way the rule is probably not needed, as in a real emergency diagnostic testing will proceed without many of the niceties. Part of the problem here is that no one trusts this administration to tell the truth or to make judgments for anyone’s benefit but their own and their cronies. That’s a problem of their own making.
Having said that, this rule seems reasonable to me. If there’s something about it not visible on the surface I’d like to know. I’m educable.