What is Genetic Repositories Australia (GRA)?
GRA provides Australian medical researchers with a national facility for the processing, long-term secure storage and distribution to qualified investigators of human genetic material (DNA and cell lines) collected from patients and healthy participants from studies on a range of diseases and their outcomes to facilitate genetic analyses for medical research.
Who will use GRA & why consider submitting samples?
Submission of samples (blood/tissue etc) to the Repository may give scientists material that can help them to develop new understanding about the cause of disease, new diagnostic tests, new treatments, and new ways to prevent diseases.
Where is GRA located?
GRA is located at Neuroscience Research Australia, Randwick, NSW, Sydney, Australia.
What happens to the blood/saliva/tissue sample?
Samples are sent to the GRA facility where genetic material (DNA) will be extracted from the sample. In order to ensure an ongoing source of DNA, white blood cells (lymphocytes) are cultured and kept growing in the laboratory, as a cell line, which allows a source of genetic material without having to obtain another blood sample. These cell lines can be stored indefinitely.
What happens to samples if GRA closes?
The genetic material stored by GRA is a precious and scientifically valuable resource that should not be lost to future medical research, however in the event GRA closes, attempts will be made initially to transfer samples to a third party willing to undertake the responsibility for managing GRA. This would only occur if the third party adhered to the current guidelines set out by the GRA Scientific Advisory Committee and the National Statement on Ethical Conduct in Human Research (2007). Should no third party exist, or if funding for this initiative ceased, then GRA will no longer operate and all genetic samples and accompanying data will be destroyed.
Will GRA provide any results to participants?
Since the results generated from samples are for research purposes only, no results will be provided to participants. However, in the event that information of clinical significance (i.e. one which has a significant probability of impacting on the health of the participant or that of the participant’s children) is identified by the researchers using samples sourced from GRA, every effort will be made to contact the participant through the Chief investigator of the recruiting study.
What happens if a participant decides to withdraw samples from the GRA repository collection?
Donation is entirely voluntary and if a participant chooses to withdraw, there will be no penalty or loss of benefits. If the participant wishes to withdraw samples from GRA, this can be done by notifying the Chief Investigator of the recruiting study. If the participant withdraws from the study, GRA will follow the directions of the relevant Chief Investigator to destroy the participant sample or to allow the participant sample to continue to be used.
What are the benefits of participating in GRA’s repository collection?
You will not directly benefit from the research conducted using your genetic material, nor will you receive either now or in the future any payment, compensation, royalty or any other financial benefit which may result from the research, but your sample may benefit the community at large or some particular group. We thank you for your participation – your assistance will help advance medical research.
If I have any questions who should I contact?
Further information is available by contacting +61 2 9399 1746 or firstname.lastname@example.org
Dr Ralph Stanford. Originally published in NeuRA Profile Magazine 2018 Recovery of function after acute traumatic spinal cord injury is limited, but the concept of using drugs to protect injured nerve cells offers hope of improving outcomes. NeuRA’s Dr Ralph Stanford has partnered with AOSpine in North America to establish a clinical trial of the drug riluzole in the early […]