Withdrawal and Re‑consent

Taking part in the Australian Arthritis and Autoimmune Biobank Collaborative (A3BC) is entirely voluntary.
Participants are given clear information that they do not have to take part, and that choosing not to participate, or choosing to withdraw later, will not affect their clinical care in any way.
Participants are free to withdraw at any time. Please note that if samples or data have already been used in ethically approved research, it may not be possible to remove them from analyses that have already occurred.

Re‑consent

Because A3BC is a long‑term study and includes children and young people, re‑consent is required at certain life stages.

Children under 14 years

  • For children recruited under the age of 14, consent is provided by a parent or legal guardian on the child’s behalf.
  • If a child is listed on two Medicare cards, consent relating to Services Australia data requires authorisation from both parents or guardians.

At 14 years of age

  • When a child participant turns 14, they will be contacted by the A3BC team to provide their own consent for access to Services Australia data (e.g. Medicare, PBS and immunisation records), as required by Australian law.
  • Parent or guardian consent continues to cover other aspects of participation (e.g. questionnaires, biospecimen collection and re‑contact) until the participant turns 18.

At 18 years of age

  • When a participant turns 18, they are invited to re‑consent as an adult to continue their full participation in A3BC.
  • This adult consent replaces parent or guardian consent and allows participation to continue seamlessly into adulthood.

Children recruited between 14 and 18 years

  • Consent is completed jointly by the parent/guardian and the child.
  • The child provides consent for Services Australia data.
  • The parent/guardian provides consent for other study components (e.g. samples, questionnaires and future contact).

Further information is available in the FAQ sections:

  • Consenting children
  • Withdrawal of consent or change of details

Participant‑led withdrawal

A3BC participants can change their mind at any time about participating. They are not required to give a reason for withdrawal, although feedback is always welcome and helps improve the project.

Withdrawal is flexible, and participants can choose to withdraw from some or all aspects of participation.

Options for withdrawal

Participants may choose between two main options:

  1. Stop active participation only
    • No further samples or data are collected
    • Previously collected samples and data may continue to be used in ethics‑approved research
  2. Full withdrawal
    • No further participation
    • Stored samples and data that have not yet been used in research are destroyed where possible

Participants may also choose partial withdrawal, for example:

  • Stopping further blood or sample collection but continuing questionnaires
  • Stopping questionnaires while allowing ongoing data linkage
  • Opting out of future contact while remaining enrolled

Even if a participant fully withdraws, they may still access public news and updates via the A3BC website.

Participation remains current for the life of the project, including after death, unless the participant explicitly withdraws using the A3BC Withdrawal of Participation Form.

How to withdraw

Participants can:

  • Contact the A3BC team by phone or email for assistance, or
  • Download the A3BC Withdrawal of Participation Form from the website, complete it, and return it by email

Further information is available in the FAQ section:

  • Withdrawal of consent or change of details

Investigator‑led withdrawal

In rare circumstances, an investigator may withdraw a participant from A3BC if:

  • The participant is unable to continue to meet study requirements
  • Participation would place the participant at risk
  • A significant change occurs that makes continued participation inappropriate

These decisions are made with participant safety as the highest priority.

Use of samples and data after death

Australian research ethics guidelines recognise that people may wish to make decisions about the use of their samples and data after death.
During the consent process, participants are asked whether they agree to:

  • Continued storage and use of their samples and data after death
  • Ongoing linkage to health information for future ethics‑approved research

Any wishes expressed by a participant regarding post‑mortem use of samples and data are respected.
If no withdrawal is requested, consent remains valid for the life of the A3BC project.