For many researchers in Australia who are investigating the eye, access to end-of-life (deceased) donor eyes is paramount. Despite this, researchers who seek deceased human eye donations for their projects may not be prepared for the barriers they may face.
In Australia, access to deceased eye donations for research is through an eye or tissue bank.
There are five banks that manage this in Australia, located in Adelaide, Brisbane, Perth, Melbourne, and Sydney.
They work with Donatelife and the Australian Commonwealth Government’s Organ and Tissue Authority to recover and allocate tissue for transplantation, training, and research.
While each bank operates slightly differently, they generally work with end-of-life donation agencies and hospital and mortuary staff to identify deceased donors, discuss donation with the donor’s family, and then consent and recover the donation.
They then allocate the donation to research groups with ethics approval, and approval by their bank.
Some banks require researchers to reimburse them for all or part of the costs they incurred to recover and provide the tissue, while others provide as gratis.
While this process seems straightforward, in Australia – as elsewhere in the world – access to deceased research donation is limited.
This is because the donation system has been established to support transplantation, with research demand emerging as an area of secondary need. There are several key reasons for research donation access limitations:
1. The health system [Medicare/private health insurance] reimburses the banks only when the donation is transplanted. This means most banks, unless they are reimbursed, do not have the resources to recover additional quantities of donations for research unless the research team reimburses them.
2. The public donation awareness programs, the donation system and end-of-life conversation focuses predominantly on transplantation. Therefore, donors and families have not had the chance to receive information about becoming a research donor, and in turn have to make the decision at the point-of-donation.
3. In Australia, researchers have historically received eye donations as gratis. They have not had to budget and therefore do not have the resources ready to reimburse the bank.
4. Demand from Australian researchers has increased in the last five years, meaning the few donations that are available must now stretch across more research projects.
5. As researchers now require access to ‘big data’, individual research projects are now seeking greater quantities of donations. These are often above the ability of the current system.
Collectively, this means researchers, regardless of obtaining ethics and bank approval to receive tissue, do not receive access to enough donations in their expected time frame.
This means some researchers may have to amend their research protocol timeline and/or design.
While addressing system-wide issues will take some time, researchers who need access to deceased human eye donations can help improve their access to tissue long term by connecting with their nearest bank before submitting grants and ethics applications.
This will allow the bank to provide practical guidance on how to access donations to prepare the research team for any challenges ahead.
Lastly, everyone can help share forward the importance of becoming an end-of-life donor for transplantation, training and research, and register themselves on the Australian Donatelife Register at: www.donatelife.gov.a/register-donor-today.
NOTE: Find a local eye bank: ebaanz.org/about-us/#Eye-Bank-Members
Further reading: Machin H, Brown K, Sutton G, Baird P. Ocular Tissue for Research in Australia: Strategies for Potential Research Utility of Surplus and Transplant-Ineligible Deceased Donations. Translational Vision Science and Technology. April 2020, Vol.9, 4. doi: doi.org/10.1167/tvst.9.5.4
About the author:
Name: Heather Machin
Qualifications: RN MBA PhD
Primary place of work: The Lions Eye Donation Service and Corneal Research Unit, Centre for Eye Research Australia
Position: CERA Biobank Lead, Senior Project Manager
Location: Melbourne
Years in profession: 21
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