Privacy and research involving humans.

Area of Science:

• Medical ethics
• Social science research
• Legal compliance

Background:

• Human research ethics committees in Australia must consider privacy law compliance.
• Recent legislation introduced federal private sector and state/territory privacy protections.
• Victorian privacy legislation specifically covers public sector information and health records.

Purpose of the Study:

• To examine the implications of new privacy regimes on human participant research.
• To assess the impact on ethics committees' review processes.
• To identify potential barriers and facilitators for research under new privacy laws.

Main Methods:

• Review of Australian federal and state privacy legislation.
• Analysis of implications for human research ethics.
• Case study focusing on Victorian privacy laws and their effect on health and non-health research.

Main Results:

• Privacy law is a potential barrier to human research.
• Exceptions for medical and health research have been effectively addressed.
• Non-health-related research, such as social and socio-legal research, may be significantly impeded by privacy law and its 'chilling effect'.

Conclusions:

• While privacy law accommodates health research effectively, it poses a potential challenge for social and socio-legal research.
• Ethics committees must navigate complex privacy legislation.
• Further consideration is needed for the impact of privacy law on diverse research fields.