SHOAMP storage arrangements

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Did you participate in the SHOAMP study? To withdraw consent for further research, contact the Australian Institute of Family Studies.

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What’s new?

In consultation with the Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP) Serum Management Committee:

  • Serum-storage arrangements have recently been updated.
  • Data-storage arrangements with third-party providers have been reviewed, and new arrangements have been established.
  • You can withdraw consent for your sample to be used in further research by contacting the Australian Institute of Family Studies.

Note: There is no impact on, or change to, SHOAMP Health Care Scheme entitlements. You can read more information about the SHOAMP Health Care Scheme.

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What is SHOAMP?

  • SHOAMP was commissioned by the Department of Defence in 2001 as a response to a Royal Australian Air Force Board of Inquiry in 2000.
  • Researchers from the University of Newcastle examined aspects of the F-111 aircraft fuel-tank Deseal/Reseal programs in relation to health, chemical exposure, and work practices.
  • Participants in the study involved past and present serving members of the Royal Australian Air Force and civilian workers who may have assisted with aircraft-maintenance activities between 1975 and 1999.
  • Serum samples were collected from some participants in 2004 for long-term storage, so that if any relevant tests became available in future, further analysis could be carried out.
  • In anticipation of these potential scientific developments in testing and analysis, the researchers advised participants that their serum samples would be stored for 50 years.
  • The researchers reported their findings from the study in 2004.
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Serum-sample storage arrangements

  • The serum samples were stored with QML Pathology for 17 years.
  • With the support of the SHOAMP Serum Management Committee, the samples were transferred to QIMR Berghofer Medical Research Institute in November 2021.
  • The samples were moved, because QML Pathology advised they could no longer commit to storing the samples.
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Data-storage arrangements

  • De-identified study data is stored with the Australian Institute of Health and Welfare.
  • There are new arrangements in place for the storage of the list of codes (known as the ‘data-linkage key’) that enable a study participant’s serum sample or study data to be matched to them.
  • The data-linkage key is stored by the Australian Institute of Family Studies, on behalf of the Air Force Association.
  • The data-linkage key, serum samples, and de-identified study data are stored separately from each other.
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Study participants who agreed to have their serum sample stored can withdraw consent for their sample to be used in further research.

  • To withdraw consent, participants can contact the Australian Institute of Family Studies at shoamp-requests [at] aifs.gov.au, or complete the online form.
  • This process is managed by the Australian Institute of Family Studies as they hold the data-linkage key that matches a sample with a study participant.
  • If you wish to withdraw consent, the Australian Institute of Family Studies will take your personal information and find your Study ID number. They will then give the Study ID number to QIMR Berghofer Medical Research Institute so your sample can be marked 'not for further research'.
  • The unique Study ID number is the only way a sample can be re- identified and matched to an individual study participant.
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Research ethics

  • Human-research ethics committees review research proposals involving human participants to ensure they are ethically acceptable.
  • The Departments of Defence and Veterans' Affairs Human Research Ethics Committee (DDVA HREC) provides independent oversight and governance on the ethical protocols of Defence and veteran-related research.
  • DDVA HREC gave approval to store the serum samples with QIMR Berghofer Medical Research Institute, the de-identified study data with the Australian Institute of Health and Welfare, and the data-linkage key with the Australian Institute of Family Studies.
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How study information is stored

  • To safeguard the security of study participants' information, the serum samples stored at QIMR Berghofer Medical Research Institute and the de-identified study data stored with the Australian Institute of Health and Welfare are not stored with any personal identifying information.
  • Samples and study data are stored with a unique Study ID number.
  • Some study participants did not give any personal information at the time they gave their samples and/or study data.
  • If you did not give any personal information, and you do not want your sample used for further research, the Australian Institute of Family Studies will need to know your Study ID number so your sample can be identified.
  • For those study participants who did give their personal information, that information is stored separately by the Australian Institute of Family Studies on the data-linkage key. The data-linkage key also contains the Study ID number which is then matched to your individual sample.
  • Neither DVA nor the Department of Defence have access to any of your personal identifying information or your Study ID number. This information is only held by the Australian Institute of Family Studies who adhere to rigorous privacy-preserving protocols.
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Counselling services

SHOAMP Health Care Scheme Group 1 and Group 2 participants have access to general counselling provided by the Open Arms - Veterans & Families Counselling.

Open Arms - Veterans & Families Counselling can be contacted in any state, on 1800 011 046.

To arrange counselling, you should call the nearest Open Arms - Veterans & Families Counselling office.

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Frequently Asked Questions

What does SHOAMP stand for?

Study of Health Outcomes in Aircraft Maintenance Personnel.

What is SHOAMP?

In response to a Royal Australian Air Force Board of Inquiry in 2000, the Department of Defence commissioned a research study in 2001 into the health outcomes of aircraft-maintenance personnel who worked on F-111 fuel-tank repairs between 1975 and 1999. The fuel-tank repairs were known as the Deseal/Reseal program.

Who conducted the study?

Researchers at the University of Newcastle conducted the SHOAMP and published interim findings in 2003 and a final report in 2004.

What has changed?

Serum samples collected from some study participants in 2004 were moved from QML Pathology to QIMR Berghofer Medical Research Institute in November 2021.

De-identified study data was moved from the University of Newcastle (original researchers) to the Australian Institute of Health and Welfare in November 2022.

The data-linkage key (which matches serum samples and/or study data to a participant’s personal information using a Study ID number) was moved from the University of Newcastle to the Australian Institute of Family Studies in June 2023.

Why were the changes made?

When they consented to participate in the study, participants were advised their serum samples would be stored for 50 years and, if changes were made, they would be informed of the revised arrangements. Participants were also told their study data would be kept, but no timeframe was specified.

QML Pathology, who held the serum samples for 17 years, advised they were no longer able to store the samples. QIMR Berghofer Medical Research Institute now store the serum samples.

The University of Newcastle advised they were no longer able to store the de-identified study data. The Australian Institute of Health and Welfare now store the de-identified study data.

The University of Newcastle advised they were no longer able to store the data-linkage key. The Australian Institute of Family Studies now store the data-linkage key.

Why did notification of the sample move occur now?

Notification of the sample move could not occur until arrangements had been finalised for all study elements (samples, de-identified study data, and data-linkage key). These were all finalised in June 2023. Following this, the processes for actioning requests from former study participants were developed and ethically approved. The communications — advising that the samples were moved and how to make requests relating to accessing data and/or samples — were subsequently rolled out in December 2023.

Who approved the changes?

The Departments of Defence and Veterans' Affairs Human Research Ethics Committee (DDVA HREC) gave approvals to make the changes in storage arrangements.

The changes were also made in consultation with the SHOAMP Serum Management Committee which oversees management and governance of the storage arrangements.

Are there any changes to the SHOAMP Health Care Scheme entitlements?

No.

Where is my serum sample stored?

If you gave consent for a serum sample to be collected and stored, it is with QIMR Berghofer, Medical Research Institute in Brisbane. (Not all study participants who gave a serum sample gave consent for storage, and not all study participants gave a serum sample.)

Where is my de-identified study data stored?

If you gave consent for study data to be collected and stored, it is with the Australian Institute of Health and Welfare in Canberra. Not all study participants who gave study data gave consent for storage, and not all study participants completed the study data.

How long is my serum sample in storage for?

If you gave consent for your serum sample to be stored, it is in storage for 50 years from 2004.

Can I withdraw consent for my serum sample to be used in further research?

Yes. You are not committed for the full 50 years if you have changed your mind.

How do I withdraw my consent?

Contact the Australian Institute of Family Studies on shoamp-requests [at] aifs.gov.au or complete the online form. They will take your personal information and find your Study ID number. They will then give the Study ID number to QIMR Berghofer Medical Research Institute, where the samples are stored, so your sample can be identified using the Study ID number and marked 'not for further research'.

I did not give consent for my personal information to be collected when I participated in the study. How can my sample be identified and marked 'not for futher research'?

If you did not give consent for your personal information to be collected at the time you gave your sample, your sample cannot be re-identified without your Study ID. If you would like your sample marked 'not for further research', the Australian Institute of Family Studies will need to know your Study ID number so that the storage provider can identify your sample. It cannot be identified without your Study ID number.

Where is my personal information held?

If you gave consent for your personal information to be collected, it is in secure storage with the Australian Institute of Family Studies on a data-base called a data-linkage key. Not all study participants gave consent for their personal information to be collected.

What is the data-linkage key?

The data-linkage key is a data-base that holds your personal identifying information, including your name, date of birth, and your unique Study ID number. The information contained on the data-linkage key is the only way your serum sample and your study data can be matched to you. This is because your serum sample and study data (if you gave permission for either to be collected and stored) is labelled with your Study ID number, but not your personal information. Only the Australian Institute of Family Studies have access to the data-linkage key.

Does DVA or Defence have access to my personal information?

No. DVA and the Department of Defence do not have access to any of the information, data, or samples you gave to researchers as part of the study and do not know the identity of anyone who chose to participate in the study.

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More information about SHOAMP

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