Twins Research Australia’s system of governance ensures accountability, fairness and transparency with all of its stakeholders.
Ethics and privacy
Twins Research Australia takes its ethical and privacy responsibilities very seriously.
The NHMRC has published a National Statement on Ethical Conduct in Human Research. The statement emphasises each institution’s responsibilities for the quality, safety and ethical acceptability of research that they sponsor or permit to be carried out under their auspices.
This statement includes those institutions whose “employees, resources and facilities are involved in research”. TRA is invested with responsibility under these guidelines to monitor the ethical conduct of its own activities and the activities of research projects that involve TRA members. This is a responsibility we take very seriously.
In 2007, TRA was awarded University of Melbourne Human Research Ethics Committee (HREC) approval for the “Program of Work” that we supply to researchers. This covers all of our operational policy and procedures, from the discussion and approval of a project to the way we invite twin members to participate and the way we report to our key stakeholders and the NHMRC regarding our progress. The document is presented in the form of an Operational Manual.
The current ethics program number for the Australian Centre of Excellence in Twin Research is: 1545015.1.
Please note that the attachments referred to in the document are available separately from TRA. If you are interested in receiving a copy of any of the attachments, feel free to contact us directly at firstname.lastname@example.org.
Study information storage and re-use
Twins Research Australia receives a copy of new and updated contact and personal information (such as your name, date of birth and zygosity) that participants provide during TRA research projects. This is for the purpose of keeping our records up to date and maintaining contact with members. Research participants who are not already TRA members can be included as a member with this information. Membership may involve contact with information about appropriate studies, TRA activities and about research findings.
TRA requests researchers provide a copy of the study material they receive from participants of TRA research projects. This information is referred to as Study Data and could include all information participants provide in questionnaires or interviews (e.g. medical history or family history). Research projects which involve the collection of samples (e.g. blood or saliva samples) can provide TRA with access to the remaining samples. Study data and samples will be a valuable resource for both current and future research.
Study data and samples provided to TRA will be available for possible use in future research. These data and samples will only be used in the future for twin health research that has been approved by an ethics committee and TRA.
Most TRA research will specifically ask participants for consent for contact, personal and study data, as well as samples to be accessed by, stored with and re-used by TRA. If you do not want information you provide to be stored and re-used, you will be able to indicate this for each study when you agree to be involved.
For research projects which don’t ask for this consent, the information collected could still be of great importance to future research. TRA works with researchers of these projects to assess the value of the study information to future research. TRA endeavours to contact participants of these projects to request consent to access and re-use the information provided. Researchers can provide TRA with access to important information if participants did not originally consent for this access. This can only occur with ethical approval, for important information which could provide benefit to the health of the public and when there is low risk to participants.
If you have participated in a TRA research project and would NOT like your information to be stored and re-used in a confidential and secure manner, please call TRA on 1800 037 021. You decision to allow this information to be stored and re-used will not affect your participation in research projects or your membership with TRA.