Privacy: bad for your health?

To the Editor: In Australia, personal and health information that identifies an individual cannot be used or disclosed for research without specific requirements being met.1 Even if these requirements are met, data custodians may still refuse access if their views are discordant with those of the relevant human research ethics committee (HREC). It is now evident that there are adverse consequences of this well-meaning legislation.

Our research group conducts community-based vaccine trials. Recently, we attempted to use school enrolment lists to mail information to parents about a study. Despite approval from the Royal Children’s Hospital HREC, one major governing body of Victorian public schools rejected our proposal on privacy grounds, as did several independent schools. Only a small number of schools raised no privacy concerns at all. The main concern expressed was that the use of these registers for health research was not related to the primary purpose of collection, and families had not consented to this use. The net result was substantially reduced access to the population eligible for recruitment.

We now have a situation in which the legislation may actually do more harm than good. This is an emerging issue here in Australia and overseas.2,3 Even more worrying are the findings of an Australian survey in which 61% of adults believed that even their de-identified health information should not be used for research purposes without their consent.4 Health research is dependent on access to population datasets to recruit participants, monitor health indicators, identify risk factors and inform interventions. Non-representative access threatens a study’s validity, resulting in poorly informed interventions, policy and funding decisions. The situation may now have progressed beyond reasonable trade-offs between the public good and individual privacy to the point where important research cannot be done at all, and the opportunity for advances in health are lost.

Despite statutory guidelines,1,5 there are widespread differences in interpretation of the legislation, particularly regarding the terms “practicable” and “public good”. Amendment of the legislation in this respect is therefore urgently required, together with clauses which facilitate a researcher’s ability to inform the public of a particular project and enable individuals, not organisations, to decide whether they wish to participate. There needs to be greater effort in gaining public understanding of the legislation and its intent with respect to research. In addition, upfront declarations and “opt-out” clauses about the use of personal information for health research must also be included in the privacy statements that organisations are now legally required to provide to individuals at the point of data collection.