The role of the ‘commercialisation effect’ in shaping Australians’ attitudes towards a hypothetical national genomic repository

30 Oct 2025

Australia does not have a national genomic repository as yet. This project investigated the safeguards that could be put in place to maximise trust in, and willingness to donate to, a hypothetical national repository.

By Dr Brad Elphinstone (belphinstone@swin.edu.au), Department of Psychological Sciences, Swinburne University of Technology

This article is in memory of Prof Christine Critchley who was awarded the grant that funded this project, shortly before her sudden passing in 2020.

What is the ‘commercialisation effect’ within genomics and why is it important? 

Research shows that people are much less willing to donate their genomic data and are less trusting of genomic research and repositories when there is a possibility that commercial organisations may gain access to data (https://journals.sagepub.com/doi/full/10.1177/09636625241230864). This reticence to share stems from concerns about genetic discrimination from employers or insurers and that companies may unfairly profit from donated genomic data. However, some level of commercial involvement may be unavoidable due to the costs of running genomic repositories, conducting research, and bringing new products or treatments to market. Australia does not currently have a national genomic biobank. Our project (funded by an Australian Government Medical Research Future Fund grant) aimed to identify legal safeguards that may contribute to Australians’ willingness to donate to a national repository even when commercial involvement is a possibility.

What does our research indicate about the commercialisation effect in Australia?

The first of three studies planned as part of this project began with a national representative survey of 1000 Australians statistically classified into four groups (https://journals.sagepub.com/doi/full/10.1177/09636625241286369): 

• Highly supportive and willing to donate (approximately 23% of the population if you extrapolate from our data)
• Supportive and open to donating but wary of commercial involvement (37%)
• Supportive and open to donating but wary of both commercial and governmental involvement (26%) 
• Completely unwilling to donate under any circumstances (14%)

Our second and third studies (https://doi.org/10.3389/fpubh.2024.1508261) involved interviews with 39 participants from these groups. Chief concerns from interviewees in the “Supportive” and “Highly Supportive”  groups were genetic discrimination and corporate profit seeking, corroborating earlier work. However, respondents understood the necessity for pharmaceutical companies to remain profitable.  

Interviewees widely supported the need for a Data Access Committee (DAC) comprising internal and external experts to determine who could access the data. Interviewees also supported the implementation of penalties, such as large fines or imprisonment for misusing repository data (e.g. by seeking to reidentify donors or on-selling data). It was clear that data must remain confidential and used only for ethical human health research. 

In the third study, we tested whether the implementation of certain governance mechanisms and legal safeguards would enhance trust and willingness to donate. Based on what had received widespread support, we proposed that an Australian genomic repository would allow donors to withdraw their data at any time and that a DAC would ensure that donated data is only used for ethical human health research. We randomly presented respondents with different options for other governance mechanisms. For example, an entity that misuses the data could be sued by individual donors, be banned from future data access, face financial penalties, or criminal prosecution. 

Surprisingly, these tested governance mechanisms did not statistically significantly contribute to greater trust nor willingness to donate. This was despite interviewees in the second study highlighting that penalties such as these would be vital. We suspect that the two baseline conditions (i.e. being able to withdraw data and the use of a DAC) were enough to provide confidence in the repository.

What can we do about it?

Our findings suggest that while some Australians will remain opposed to a national genomic repository, most Australians will be willing to donate despite reservations about genetic discrimination and unfair profiteering. Importantly, addressing these concerns may not require new legislation as the implementation of appropriate operating conditions (e.g. using a DAC) may be sufficient. While penalties for data misuse will still be required, our study findings suggest that additional forms of governance may not further enhance trust or donation willingness beyond what can be achieved with appropriate operating conditions. 

We also note that the samples used in this research predominantly comprised White Australians. While the sample aligned with census data, it cannot be inferred that First Nations Australians and those from diverse communities would, for example, have the same level of trust in a DAC. Future research is required to better understand the views of these groups.

Conclusion

In line with international findings, our project indicated that the prospect of commercial involvement undermined willingness to donate to a hypothetical Australian national genomic repository. However, if there are sufficient conditions in place to provide confidence that donated data will be used appropriately, an Australian national genomic repository that allows commercial access is feasible.