Information for donor families
What is ADTB?
The Australian Donation and Transplantation Biobank (ADTB) is situated within Austin Health in Victoria and aims to extend the impact of organ donation by providing valuable donated samples to medical and scientific researchers.
Consent for the collection of the organ and tissue samples for donation to ADTB is provided by the deceased person’s legal next of kin. The organ and tissue donation samples are acquired from individuals after death and are obtained by skilled surgeons at the time of organ donation. Only samples and organs that are not used for transplantation can be donated to ADTB.
The ADTB provides donated organ and tissue samples directly to ethically approved research projects or stores samples for future medical research. These samples can support studies that may lead to better treatments, vaccines and new diagnostic tools for a wide range of diseases.
What is the purpose of ADTB?
The Australian Donation and Transplantation Biobank (ADTB) aims to improve opportunities for people to donate organs or tissues after their death for use in medical research, and to make it easier for researchers to conduct valuable research using donated organs and tissues.
The ADTB provides an organised system for collection of tissue or organ samples for use in research at the time of recovery of donor organs or tissues for use in transplantation. It then distributes these samples to researchers who have received ethics approval for specific research projects as explained below.
What is ADTB important?
The ADTB gives people the opportunity to donate organs or tissues for scientific and medical research after their death. It also helps researchers access these donated samples to conduct research that may lead to medical advancements and better healthcare outcomes.
How does organ and tissue donation for research work?
When a person donates their organs or tissues for transplantation, there is an opportunity to donate organ or tissues that cannot be used for transplantation to research. Organs and tissues that are not suitable for transplantation due to age or medical problems can still be very valuable for research. These samples can be used to help researchers to improve their understanding of human biology and disease processes, which may lead to new treatment and vaccines for common diseases such as:
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Infections (e.g., influenza)
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Cancer (e.g., lung cancer, bowel cancer)
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Autoimmune diseases (e.g., psoriasis, inflammatory bowel disease)
Why is donating to research important?
Human samples are important for advancing medical knowledge and developing new treatments and vaccines. Many research studies use animal models, but results from animal models do not always apply to humans. Therefore, access to healthy human samples is essential for researchers to obtain more relevant results. This is especially important for diseases affecting organs such as the lung and gut, where it is difficult to get samples from healthy living people.
How are research projects using ADTB samples approved?
In Australia, all research involving humans is reviewed by an independent group called a Human Research Ethics Committee (HREC).
Researchers who want to use ADTB samples must first get ethical approval from their own institution’s HREC and or Animal Ethics Committee (if relevant). They then need to get further approval from the ADTB Sample Access Committee and LifeBlood Ethics Committee.
The ADTB program is approved by the Austin Health HREC and the Australian Red Cross Lifeblood HREC (the host organisation for DonateLife) and is conducted according to the National Statement on Ethical Conduct in Human Research (2007) which protects the interests of people who agree to participate in human research studies.
Where can I learn more about research projects using ADTB samples?
Click here to read more about research projects supported by the ADTB.
My loved one is an organ donor – do they have to take part in ADTB?
Donation of organ and tissues to ADTB is voluntary. Declining to participate will not prevent a person from being an organ and tissue donor for transplantation. If the legal next of kin changes their mind after giving consent, they can withdraw it at any time—unless the samples have already been used in research.
What happens to the donated organ and tissue samples?
Donated organs and tissue samples may be sent directly to approved research projects, or first transported to the ADTB laboratory at Austin Health. At Austin Health, samples are either given to approved research projects or securely stored—either at Austin Health or at the research institution—for future research use. Some samples may be kept in storage indefinitely until they are needed for research.
The ADTB only provides donated organ and tissue samples to researchers for use in research projects that have received ethics committee approval that meets Australian standards. Current research projects involving samples from the ADTB are listed here (insert link). Donated organ and tissue samples may be used in range of different projects, but all of these projects will aim to improve understanding of human health or disease, or to develop treatments that improve human health.
The results of the approved research projects may also be used by students to obtain a degree or other educational qualification.
What happens to the information about the organ donor?
Donated organ and tissue samples, along with related health data, are stored in a way that allows them to be re-identified. Each sample is assigned a unique code, which means it can be linked back to the organ donor if needed. However, the ADTB and researchers who use these samples do not have access to personal identities—they only see the unique codes, not the names or other identifying details.
Any information collected about the organ donor that could reveal their identity is kept strictly confidential. Information will only be used for the specific purposes of the ADTB. This information will not be shared or disclosed to anyone without your explicit permission, unless disclosure is required by law (for example, under Australian privacy or health regulations).
It is anticipated that the results of research using donated organ and tissue samples will be published and/or presented in a variety of forums. In any publication and/or presentation, information will be provided in such a way that your loved one cannot be identified.
Electronic records will be stored on a password protected server based at Austin Health and paper records will be kept in a locked cabinet in the Department of Infectious Diseases and Immunology, Austin Health, and will be accessible to study personnel only.
Your loved one’s health records and any information collected and stored by the ADTB during the research project may be reviewed for the purpose of verifying the procedures and the data. This review may be done by the ethics committee which approved this research project, regulatory authorities and authorised representatives of Austin Health, or as required by law. In these circumstances, any personal information will not be collected (i.e. recorded).
In accordance with the Freedom of Information Act 1982 (Vic) (FOI Act), you have the right to make an application to obtain documents held by the ADTB in respect of your relative. Applications for access to documents are made by making an application to Austin Health’s Freedom of Information Officer at foi@austin.org.au. All applications for documents are assessed in accordance with the FOI Act.
What happens when the ADTB ends?
Biobanked organ and tissue samples and associated clinical data may be stored indefinitely. Once the samples have been used in research, data related to the samples is retained for at least seven years after publication of the research and then deleted.