Additional comments from Coalition Senators

1.1The topic of organ donation is an emotional one and an important one, and Coalition Senators would like to thank the families of organ donors and recipients for their submissions.

1.2The Coalition supports the intention of this Bill however it has concerns over the failure of the Labor Government to properly consult and communicate these changes.

1.3The Coalition would have liked to have seen greater consultation for this Bill as there are a range of diverse views from the families of donors and recipients that have not been heard through this process.

1.4While this Bill does a lot to expand the list of authorised family members and permits the Organ and Tissue Authority, DonateLife agencies, grant recipients and authorised family members to publish, disseminate or disclose information about deceased donors for the purposes of the OTA’s community awareness, educational or commemorative activities, it doesn’t address concerns regarding the rights of donors, donor recipients and their families.

1.5In his submission to this inquiry, Mr Brian Myerson OAM expressed his frustration with this Bill’s apparent disregard for donor recipients and their families.He stated that this bill:

continue(s) to deny the rights and liberties of Donor Families and Organ Transplant Recipients. These two groups have endured incredible hardships and suffering through sickness and death and are being denied the opportunity to divulge information about themselves and their loved ones as and when they wish. No liberal democracy should discriminate against these groups and should protect their basic rights such as freedom of assembly and free speech.[1]

1.6In fact, significant concern has been raised by other donor families, such as Mrs Beverley Faulks, who is concerned that changes in the law could impact her ability to have a relationship with the family who received her son’s donated organs.

1.7Such is her concern over these laws she has expressed her desire to withdraw support from organ donation all together. In her submission she states:

If all contact, by a new law, is to be taken away, I, my family, and my friends, will withdraw our registration, thus denying many people … from receiving a precious organ, and a chance for a healthy life.[2]

1.8Clearly the Labor Government has failed to communicate the intent of these laws properly, and as a result faith in the organ donation system has been lost, even by those who have a direct relationship with organ donation in Australia.

1.9Donor Families Australia in their submission also express the belief that this Bill fails to address the concerns of their members and has failed to properly consult with the donor community.

DFA is not satisfied with the current proposed amendment. It is confusing and does not meet community expectations or standards. We seek an inquiry into the way the legislative change has been developed; we demand appropriate widespread community consultation with Donor Families and others impacted by existing legislation relating to organ and tissue donation to bring them in-line with the 21st Century and expectations of transparency, freedom of speech and association and humanity.[3]

1.10The concerns of peak bodies and families is completely valid.This amendment Bill is being rushed, and the entire process has been mishandled by the Labor Government.

1.11Confusion over these laws will have a direct negative impact on organ donation campaigns.

1.12As seen in submissions by recipients and donor families, uncertainty if they have the right to discuss their story will result in families either stopping their advocacy for organ donation all together or believing they may be breaking Commonwealth law by discussing their stories.

1.13As Ms Janelle Colquhoun puts it in her submission:

I can guarantee my family will be breaking the law and talking out about the many years of extra life I was gifted because of my organ transplant.[4]

1.14While the committee received a guarantee from the department that this amendment won’t impact the rights of organ donor families and recipients, more work must be done to clarify their concerns, or else this legislation will risk sending organ donation backwards.

1.15The success of Australia’s voluntary organ donation schemes is vital to save lives of the thousands of Australians who will need an organ transplant in their lifetime.

1.16The Labor Government is risking the success of these programs by rushing through confusing legislation without any proper consultation, and not exploring other avenues that could improve our current system.

1.17One area that this committee should be looking at is how similar programs are run in other jurisdictions, such as the NHS Donor Family Care Service, which provides donor families and donor recipients the opportunity to establish relationships.[5]

1.18The Committee must seek an extension from the Senate for this inquiry, so that donor families can have the opportunity to properly engage with the legislative process for a Bill that directly impacts them, and so that this committee can explore other ways in which this Bill can be improved upon.

1.19That the Committee seeks an extension from the Senate for the inquiry into the Australian Organ and Tissue Donation and Transplantation Authority Amendment (Disclosure of Information) Bill 2023.

Senator Maria KovacicSenator Kerrynne Liddle

Footnotes

[1]Mr Brian Myerson OAM, Submission 9, p. 1.

[2]Mrs Beverley Faulks, Submission 10, p. 1.

[3]Donor Families Australia, Submission 26, p. 9.

[4]Ms Janelle Colquhoun, Submission 14, p. 1.

[5]NHS Donor Family Care Service, https://www.nhsbt.nhs.uk/how-we-help/donor-family-care-service/(accessed 25 July 2023).