Ethics and consent
Laws and regulations to protect privacy, confidentiality and cultural sensitivity; ethical data sharing; strategies for de-identifying quantitative and qualitative data.
A number of ethical requirements apply to the management of research data, particularly where the research involves human subjects (e.g. surveys, interviews, and analyses of personal data from government agencies).
Researchers must be aware of their obligations in the following areas, and address these obligations through the existing ethics application process.
- the Information Privacy Act 2000 (Vic)
- the Health Records Act 2001 (Vic)
- the Freedom of Information Act 1982 (Vic)
- the Privacy Amendment (Private Sector) Act 2000.
The National Statement on Ethical Conduct in Research Involving Humans, particularly Chapter 3.2 on Databanks, outlines researchers' responsibilities in the areas of collecting, storing, using and disclosing research data.
You must respect any confidentiality agreement about stored data that has been made with participants. Consent processes must include information about the form in which the data will be stored (specifically about identifiability of subjects) and the purposes for which the data will be used and/or disclosed. You must retain records of these agreements and ensure that data will not become available for uses to which participants did not consent.
Research involving indigenous people may have special data management requirements: decision making and communicating about methods of collecting information, including where data is stored and how it is accessed, may need special attention.
Research data planning may also highlight a need to take into account indigenous intellectual and cultural property rights, in addition to other ownership and use of copyright and intellectual property.
The Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) provides Guidelines for Ethical Research in Indigenous Studies (pdf 316kb) and other resources for learning more about these issues and how to address them.
Researchers need to understand and manage potential tensions between ethical requirements and other requirements for long-term and permanent retention and for the deposit of data in a repository or archive for the purposes of validating the research and furthering knowledge.
Holistic consideration of all of these requirements through data planning will assist researchers to maintain an appropriate balance.
The UK Data Archive, which advises researchers on these issues in the UK, recommends that researchers who wish to ethically share sensitive and confidential data can consider strategies like:
- gaining informed consent that includes consent for data sharing (e.g. deposit in a repository or archive)
- protecting privacy through anonymising data
- considering controlling access to the data (e.g. through embargoes or access/licensing terms and conditions).
The Monash University's Ethical Research and Approvals Policy states that:
As an educational and research institution, Monash recognises its responsibility to the community to ensure all research activities are conducted in accordance with the highest ethical standards and to ensure that staff and students are seen as positive role models amongst their peers and in the wider community. It is committed to protecting the rights, dignity, health, safety and privacy of the community, including research subjects, and to the welfare of animals and the integrity of the environment. While acknowledging all mandated requirements for secure data retention, protection of privacy and confidentiality, the University is also committed to promoting access to the benefits of research through collecting, storing and making research data accessible in such a way that it can be used in future by members of the research community and other interested parties.