Examining the precarious balancing of social justice and private rights within the public health information infrastructure

The growth of the public health information infrastructure has created heightened awareness of the need for protecting private rights, including but not limited to traditional privacy over personal health information and private ownership of coding systems and other technologies. However, such efforts potentially have an adverse effect on social justice. More particularly, it is argued that as private rights increase in a public system, underrepresented populations suffer disproportionately and thereby widens existing disparities.

For example, too much privacy over personal health information results in a decline in the quantity and quality of the data that is the raw material necessary to promote an efficient infrastructure. Such over-reaching may interfere with the ability to compile the community ratings data needed to provide equitable distribution of resources, may threaten scientific advances that could be achieved through medical records research; and may obstruct reporting and surveillance measures. Likewise, private ownership of the coding systems used to transmit and analyze the data subjects the infrastructure to the financial and political powers of copyright and trade secret owners. Again, the poor suffer most from the loss participation in the operations of the system, as well as its increased cost.

Consequently, as development of the public health information infrastructure continues, increased attention should be paid to the effects of private rights on social justice.