The civil libertarians had an awkward time at a conference in Melbourne last week. On one hand, civil libertarians support the public’s right to know _ especially when some sinister bureaucracy is trying to hide something. On the other hand, they support individual privacy against some meddling data-collecting bureaucracy. At the Melbourne conference, however, the civil libertarians were not faced with bureaucrats but epidemiologists.
These scientists gather information about whole populations to see if certain diseases or health defects can be linked with certain risk factors. The conference was held by the Australasian Faculty of Public Health Medicine and the Victorian Department of Health and Community Services. The civil liberties view is very much based on the individual and it has been very successful in the past decade. We have freedom of information laws in all jurisdictions which (at least in theory) uphold the public’s right to know and we have privacy laws in most jurisdictions that protect privacy. To date there has not been a significant conflict. The freedom-of-information law requires information that might identify individuals to be blacked out of documents.
On the privacy front, laws are generally framed around the principle that private information shall not be used without consent and that information gathered for one purpose shall not be used for another. It sounds reasonable until you get into health. Then the extreme civil liberties point of view arrives at a contradiction. If there is a health risk about, I want to know about it. If I am the source of that health risk, I want it kept private. So we have exceptions to the privacy rules. In the words of Alan Goldberg, QC, if there is a clear and present health danger, then privacy must give way to the extent necessary to overcome the danger. So the Garabaldi meat company is forced into liquidation in the cause of reducing food poisoning. Enter the epidemiologists.
They argued that the cases of “”clear and present danger”, though well-publicised, were very few compared to the stuff of their science: unclear and future danger. Further, the unclear and future danger does most of the killing and maiming: heart disease, cancer, multiple sclerosis and a host of other diseases with mysterious causes. The epidemiologists’ task of linking risk factor with disease can only be done with reliable data. Moreover, it can only be done economically and conveniently if the data is easily obtainable. They are now finding the privacy lobby dogs their professional lives. That lobby has been strengthened recently with AIDS, whose victims quite reasonably see that the only way to be protected from hysterical shunning and discrimination is complete privacy. As fear is stronger than sympathy, change will be slow coming.
In the meantime, the bitter irony is that privacy requirements are making more difficult the scientific work that will help prevent or cure the diseases from which these very people are suffering. Getting consent from patients to use their data, even anonymously, is very costly. Moreover, if a significant number refuse, the study is likely to become worthless because the data is selective. This is because the sort of people who refuse to give data might have correlating and or causative links that affect the likelihood of getting a disease. Some epidemiologists argue that as future and unclear danger is as significant as clear and present danger, they should be able to overrule present privacy requirements and have access anonymously to medical records.
They say computer encryption linking the names in the original data with a code in the general data can be held securely by independent third parties. (The links are needed in case the research reveals something important for individuals to know later.) Whenever someone leaves hospital, between 10 and 20 health professionals know the details of their condition and identification. Why not add one more knowing about the condition if not the identification, the epidemiologist? As the baby boomers age and get unhealthy, I suspect the epidemiologists’ arguments will start winning the argument.