Reflections on information sharing in health privacy law in New Zealand There are at least five sides to every issue – the patient’s right to medical privacy, the consumer’s rights of privacy protection, the need for governments to monitor and regulate healthcare information, and the need for companies to use information in a market-based context, and also the needs of researchers to have access to healthcare data so that they can research medical practices and cures. Burrows and Cheer (2010) identify three axioms of privacy as secrecy (our accessibility to others), solitude (the extent to which we are known to others and the extent to which others have physical access to us), and anonymity (the extent to which we are the subject of others attention). Some sphere of individual privacy is essential to the preservation of human dignity, and contemporary technology challenges that basic expectation.

Protections Ethics Health Act 1956 New Zealand Health Privacy rules 1994 New Zealand Bill of Rights Act Privacy Act 1993 Kantian deontological theory – morality in terms of principles Utilitarianism – consequentialist teleological concept Virtue ethics – character of people influences outcome Rights based theory – ethical decisions derived from equality of individuals Health Insurance Portability and Accountability Act 1956 False-light

  In most practical and research environments permissions and consent forms are used which cover any proposed data use and these may have both ethical and legal status as forms of waiver and permission for information use, assigning future rights over some forms of value that may be extracted from data provided and assuring other forms of protection such as anonymity from identification and control such as strict guidelines for information use. Under a legal understanding of freedom of self-determination, it is difficult to prohibit in theory, information disclosure – unless that process is fundamentally counter to notions of human dignity. The protection of public health requires the acquisition, us and storage of extensive health-related information about individuals and thus involves the electronic accumulation and exchange of personal data – it is feared that if privacy of healthcare information is violated, it will lead to individual discrimination about employment and insurance, for example. Or perhaps even the marginalisation of physicians from the systems and consumers they serve. As Lanier puts it, “[p]hysicians should be empowered by networked information, but instead they are constrained. . .” (2013: 67).

However, the exchange of data within an automated health information infrastructure may have many benefits. These include surveillance to identify health problems, target interventions in healthcare issues, influence on funding decisions, a reliance on the quality and reliability of healthcare information. Compromises of disclosure in healthcare information may result is psychological harms such as embarrassment, stigma and discrimination. The major variable in health information privacy law is the degree of privacy protection afforded. In the United States, the Health Insurance Portability and Accountability Act (1996), permits consumers to see medical records, to request correction to records and thus to bring about processes that disclose records and enact penalties for violation of patient privacy in healthcare information. One of the central tenets of this is that healthcare information is used for only health purposes – treatment, payment, health-care options it becomes a different commodity when it is used for any other purpose. Thus any healthcare information sharing regulations have to balance privacy protections with a civic responsibility to protect the health of the public, to conduct medical research and to prevent the commoditisation of healthcare information from abuse and/or fraud. Technological measures for health privacy are: risk assessments, password management, log-in monitoring, and other measures to encrypt, audit, validate, or record health information. Thus there are challenges to health privacy from organisational flows of information, through a variety of communication channels.

References Burrows, J., & Cheer, U. 2010. Media law in New Zealand. 6th Edition. Wellington, New Zealand: LexisNexis NZ. Lanier, J. 2013. Who Owns The Future? New York: Simon and Schuster. Health Insurance Portability and Accountability Act (1996) (United States)