Why this research matters? 
Any research involving humans must first obtain ethics approval from a Human Research Ethics Committee (HREC), however the ethical considerations of a research study may differ based on the study type and methodology. Genetics and genomics research in particular has many unique ethical considerations due to its unique nature as something very personal to an individual, but also shared among relatives. However, previous research has shown Australian HREC members have suboptimal genomic knowledge and do not feel confident reviewing genomics ethics applications.

Study aims  

This study aims to develop an online educational tool for HREC members to increase their knowledge of genomics and the associated ethical considerations, allowing them to more confidently review genomics ethics applications. Ultimately, this will promoting more efficient and comprehensive assessments and improve the quality of genomic research.

What we have achieved so far 

So far, we have: 

• Through a national survey to Australian HREC members, we assessed their knowledge of genomics and confidence reviewing genomics ethics applications (i.e situational and opportunity analysis and stakeholder engagement). Survey participants lacked confidence reviewing genomics ethics applications, and identified a need to improve their knowledge of genomics research and ethical considerations. Read more here.

• Created and pilot-tested an online educational resource for HREC members that addressed genomics theory, ethical considerations, and tips for reviewing a genomics ethics applications. In brief, HREC members reported increased genomics knowledge and confidence reviewing genomics applications, and intended to access the tool in the future. Read more here.

Current research updates 

Currently, we are working to improve the online resource based on feedback received from HREC members during pilot-testing. Key changes include more interactive elements, research considerations for diverse communities, more detail around data management/storage, and more detailed suggestions for reviewing a genomics ethics application

What’s next? Future research areas  

In the future, we will: 

• Advertise and distribute the second iteration of the resource to all HRECs in Australia

• All Australian HREC members will be invited to complete short-term and long-term (2-3 years) surveys to capture if/how they utilize the resource and whether it has improved their genomics knowledge and confidence reviewing genomics ethics applications.

Staying up to date  

If you’re interested in learning more about this research or getting involved, please contact us via email (preferred) or phone.  

📩 igmgenomics@uq.edu.au

Who is working on this study?  

Ella McGahan & Aideen McInerney-Leo

How is this study funded?  

This study is funded by a UQ Foundation Research Excellence Award