FAQ

The Wesley Research Institute Biobank is located in the grounds of the Wesley Hospital, Brisbane. It is a not-for-profit service aimed at facilitating ethically sound and scientifically valid research using human tissue. The Biobank has approval from the Uniting Care Health Human Research Ethics Committee (HREC) to collect and store tissue and blood samples, and clinical data from consenting patients.

Researchers who are investigating other ways of better predicting, treating and preventing cancer and diseases rely on people like you to donate samples for medical research purposes. Researchers can apply to the Biobank for access to the donated samples and related clinical information, provided their research project meets stringent ethical and scientific standards.

The Wesley Research Institute Biobank was first founded in 2007, with the intention of being a key tissue bank resource in Queensland and Australia. Our purpose is to facilitate medical research by providing high quality biological samples with accompanying clinical information to researchers.

We take a collaborative approach to research, bringing together doctors, nurses, allied health professionals, scientists, patients and the community to work toward a common goal – to improve healthcare outcomes.

Studies to improve healthcare or give us a better understanding of different diseases or conditions. Understanding mechanisms that underlie biology and disease and translating biomedical research into improvements in healthcare, especially through advancements in diagnostics and therapeutics.

Doctors and scientists involved in medical research can apply to the Biobank, which is overseen by the Uniting Care Health Research Ethics Committee, for access to donated samples and related clinical information, provided their research project meets stringent scientific standards. The HREC is made up of doctors, lawyers, research scientists, community members and ethicists. It was established to ensure that projects are scientifically sound and are conducted according to the National Statement on Ethical Conduct in Human Research (2007) as issued by the National Health and Medical Research Council of Australia (NHRMC).

As the Biobank is not-for-profit, none of your samples will be sold for profit. We will charge researchers a fee to cover the costs involved with collection, processing and storage of biological samples.

Potential participants are identified by trained specialists and the patient is provided with a Biobank brochure, consent form and patient information sheet. Informed consent is then obtained. Participants are given time to read the information, ask questions and discuss with their family. If the participant agrees, the Biobank organises the collection of tissue samples as part of the normal care process. A sample is then collected from tissue that would normally be made into medical waste and is not needed for diagnostic purposes. A minimum dataset is collected for each participant and is entered into the Biobank’s database along with information such as Histology and other pathology reports. All information is collected with a participant’s consent, and may include follow-up data from relevant cancer registries, medical records and pathology.

Matching your donated sample with data from your health records can give researchers a better understanding of trends in different patient populations. For example, your lifestyle, sex, medications, treatments or other factors might affect how you respond to a particular treatment or affect your risk of developing certain health concerns. Linking your data to the biological samples helps researchers to better understand health and wellbeing within our communities and that information can be used to improve healthcare delivery and the development of future treatments. Potentially even developing more personalized treatments.

To protect your privacy, personal information collected by the biobank is kept secure and confidential as required by law. It can only be accessed by authorized biobank staff. In general, clinical data provided to researchers will be de-identified, meaning that personal information such as your name and date of birth are removed and replaced with a unique code known only to the biobank staff. Identifiable information is NOT given to anyone without your written consent and no identifying information will ever appear in any published reports or journals.

There is no physical risk to you as the Biobank only stores excess tissue and blood that is not necessary for diagnosis. There is also no risk to your identity, as all samples are de-identified and given unique codes to protect your private information.

We cannot collect your tissue without your informed consent. Your participation is completely voluntary and you are under no obligation to donate tissue or blood samples. Your decision will not affect your medical care or relationship with the Wesley Hospital (or associated Hospitals). If at any point you no longer wish to participate, you can withdraw consent at any time.

You will be contributing to ground-breaking research that potentially leads to improved health outcomes. Although there is no direct benefit to you, donation of your excess tissue and blood samples and de-identified clinical data will provide valuable resources to researchers investigating the biochemical and genetic causes of disease.

It is very unlikely you will receive results from research conducted on your tissue. However, in the unlikely event that a researcher reveals anything of medical importance specific to you and your family, the researcher is required to inform the HREC, who will decide whether it is in you best interest to be contacted. If it is decided that you should be contacted, the Biobank staff will contact your doctor and you will be given the option of learning more information.

You are free to change your mind at any point. Should you wish to withdraw your consent, simply contact the Biobank for a “Withdrawal of Consent” form. All samples and information will then be removed from storage and destroyed. However, if a sample has already been distributed it will not be possible to be returned and destroyed.

In the event of your death, the Biobank will continue to store and provide your samples to ethically approved researchers. You can nominate an optional contact person on the consent form as a representative to be contacted about any matter that we would have otherwise contacted you about. This person should be a blood relative or a spouse/partner.