In 1997, kConFab, with the help of the Family Cancer centres in Australia and New Zealand began enrolling families with a strong history of breast and breast/ovarian cancer. Genetic, epidemiological, medical and psychosocial data collected from these families by kConFab nurses and researchers are stored in a de-identified fashion in a central relational database. Biospecimens collected from family members are used to characterise germ-line mutations in predisposing genes such as BRCA1 and BRCA2.
The aims of the consortium are to make data and biospecimens widely available to researchers for use in peer-reviewed, ethically-approved funded research projects on familial aspects of breast cancer.
ABN-Oncology Access Policy
The ABN-Oncology group was established to provide a conduit for researchers to gain access to ethically consented, high quality clinically-annotated biospecimens and data. The intention of the group is to make information on tissue repositories freely available and to provide fair and equitable access to tissues for Australian researchers.
The ABN-Oncology group aims to facilitate access to individual tissue banks through the Tissue Specimen Locator and the Hub Manager. Specimens are being collected using tissue bank-specific patient information and consent forms, therefore access to specimens is controlled by the collecting bank and relevant Human Research Ethics Committee. Each individual tissue bank also has control over its own application procedure and access policy, based on the scientific merit and peer review of applications submitted, and the impact the request will have on the resources of the tissue bank.
Should a disagreement arise between an individual tissue bank and a researchers applying for tissue, ABN-Oncology will assist by inviting suitable individuals with experience in the relevant areas to form an appeals board to hear the dispute.
Should the tissue samples you require not be available, the ABN-Oncology group may still be able to assist by prospectively collecting the samples you require. For more information, please contact the Hub Manager.
Specific kConFab Access Policy
Researchers who use material originating from the Australasian Biospecimen Network – Oncology group are required to acknowledge the ABN as the source of research samples in all relevant publications and presentations. This acknowledgement must appear in the Methods or Acknowledgements section as a minimum. Recommended wording is as follows:
‘Biospecimens were provided by kConFab, a member of the ABN-Oncology group, which is funded by the National Health and Medical Research Council’.
Should a significant contribution be made by the ABN-Oncology group to the publication in question, co-authorship may be sought. This will be assessed on a case-by-case basis, and will follow the recommendations of the authorship section of the ‘Joint NHMRC/AVCC Statement and Guidelines on Research Practice’ (available at http://www.nhmrc.gov.au/funding/policy/researchprac.htm).
Once an article is submitted for publication, the Chief Investigator must send a copy of each publication to the Hub Manager of the ABN-Oncology group.