The issue of genetic discrimination in the context of life insurance and access to genetic data is currently being reviewed by the Australian Treasury. Insurance industry bodies argue that a total ban on genetic discrimination would lead to higher life insurance premiums. However, this legislation has broader implications for genomic research and public trust in Australia.
Genomic research plays a crucial role in developing cures and treatments for diseases, relying on the donation of genomic data from individuals. This data, derived from sources like blood samples, is valuable when combined with lifestyle and health records. By analyzing patterns in the data, researchers can identify genes associated with specific illnesses and develop targeted treatments.
To facilitate genomic research, national biobanks exist in countries like the United Kingdom. These biobanks store data from thousands of individuals. While Australia does not have a national biobank, some researchers in the country collect genomic data for studies.
Trust in biobanks is generally high among the public, as they recognize the potential benefits of genomic research. However, trust decreases significantly if there is commercial involvement in biobank management or research. Concerns arise about prioritizing profit over public good and the potential for insurance companies to deny coverage or increase premiums based on genetic data.
If people are reluctant to donate their data due to fears of genetic discrimination, it could hinder the progress of genomic research. Public institutions like universities and hospitals are viewed as more trustworthy managers of biobanks because they are not seen as profit-driven.
Research conducted in Australia aimed to understand public attitudes towards genomic research and sources of distrust. The study categorized Australians into four groups based on their attitudes: highly supportive and willing to donate, supportive but wary of commercial involvement, supportive but wary of commercial and governmental involvement, and completely unwilling to donate.
The research found that concerns about genetic discrimination from insurers or employers were prevalent across all groups. However, respondents recognized the need for pharmaceutical companies to make some profit. Based on interviews and surveys, it was determined that a national biobank should be managed by a public institution and have a data access committee to evaluate research applications. Researchers would only be granted access if they were affiliated with established organizations and committed to ethical use of the data.
Overall, Australians support genomic research but are concerned about the risk of genetic discrimination. Legislation that addresses this risk could indirectly benefit genomic research and support for a national biobank in the future.
The research project was conducted in collaboration with Jarrod Walshe from Swinburne University of Technology, Dianne Nicol from the University of Tasmania, and Mark Taylor from the University of Melbourne. The project received funding from a Medical Research Future Fund grant awarded to Professor Christine Critchley.