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UNDERSTANDING HOW GENETIC AND GENOMIC INFORMATION
IS RE-ANALYSED IN A PUBLIC HEALTH SETTING

PREAMBLE

We are interested in learning how genetic and genomic information is currently being analysed, and how it might be re-analysed within Queensland Health in the future. To examine this, I am interviewing a range of different people across Queensland Health.

In these discussions, we’ll talk about current testing practices, how re-analysis might work in the current system and how it might work in the future.

The interviews will be semi-structured, which means that our discussion will most likely resemble a dialogue. The interviews can be in person, or online. We expect that these sessions will last between 60-120 minutes.

The data collected during the interviews will be anonymous.

If you have any questions, please contact me on a.robertson2@uq.edu.au.

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APPROVALS

This study has been approved by the QIMR Berghofer HREC as low or negligible risk project (QIMR Berghofer HREC project number P3654). If you would like to speak with someone with regards to ethical matters or wish to register a formal complaint about the conduct of this research – please contact the QIMR Berghofer HREC Secretary via email at HREC.Secretariat@qimrberghofer.edu.au.

This study has received approval from the Metro North HHS Research Governance Office. Pathology Queensland has provided a Laboratory Declaration that allows Pathology Queensland members to contribute to this work.

INTRODUCTION

As part of a project supported by QIMR Berghofer, The Digital Health CRC, The University of Queensland, and Queensland Health, this project aims to examine how genetic and genomic information is re-analysed in a public health setting through a number of semi-structured interviews with experts and leaders in the genomics space within Queensland Health.

WHAT IS THE AIM OF THIS STUDY?

The periodic re-analysis of clinical genetic and genomic information is now recommended by a number of industry bodies. However, the re-analysis of this information is complex, and different providers can have different processes to re-analyse this information. The aim of this study is to understand how genetic information is re-analysed across the different areas of Queensland Health, and the types of information used to inform these decisions.

HOW WILL THE STUDY BE CARRIED OUT?

A number of semi-structured interviews will be carried out with key thought-leaders, experts and stakeholders in the genomics space from Queensland Health.

  • Each interview will be approximately 60-120 minutes
  • Interviews will be available in person or via video calling platform
  • Meetings will be facilitated by Alan Robertson (UQ, DHCRC, QLD Health, QIMR Berghofer)
  • If participants want to contribute further comments or information after the conclusion of the meeting they are welcome to contact Alan Robertson (via email and phone).
  • With permission meetings will be recorded. Information from these audio recordings will be transcribed, and the content will be de-identified.
  • The information from the interviews will be de-identified and summarized in a short report, and shared with the stakeholder organisations.
  • The report will contain summarised information from the interviews. It may also include de-identified quotes.
  • This report will make up part of a publicly-accessible thesis chapter. There may be potential to publish these findings, however this is yet to be determined.
  • A draft version of this report will be sent to all participants for review.

WILL ALL DATA PROVIDED BE CONFIDENTIAL?

Data with identifiable information will only be accessible to the study team members from QIMR Berghofer. The study team consists of:

  1. Alan Robertson (Investigator)
  2. Nic Waddell (Investigator)
  3. John Pearson (Technical Support)
  4. Conrad Leonard (Technical Support)
  5. Scott Wood (Technical Support)

For the purposes of reports, publications, presentations and press releases data will be presented as summary data or thematically amalgamated. No individual data or identifying information for the individual participants or their organisations will be reported.

Data will be stored and archived in compliance of NHMRC’s Australian Code for the Responsible Conduct of Research. Data access will be restricted to people named in this HREC approved project (P3654).

WHAT ARE THE BENEFITS OF PARTICIPATING IN THE STUDY?

There are no specific benefits to the participants in this study.

ARE THERE ANY RISKS INVOLVED?

There are no risks associated with participation in this meeting.

WHAT IF I WISH TO WITHDRAW?

Participation is voluntary, refusing to participate or withdrawing will not impact your relationship with QIMR Berghofer or The Digital Health CRC or The University of Queensland. You are free to withdraw at any time during the meeting. If you choose to withdraw, any meeting notes that reference your contribution to the meeting will be removed from the study.

IF YOU HAVE FURTHER QUESTIONS

Please contact Alan Robertson via telephone: 0405 782 793 or via email: a.robertson2@uq.edu.au

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