Regulation of non-consensual genetic testing in Australia: Use of samples from deceased persons

Abstract

The creation of a criminal offence for non-consensual genetic testing in Australia has been recommended repeatedly in recent years, but has not yet resulted in reform. The increasing affordability and accessibility of genomewide analysis amplifies the potential harm that unauthorised testing could cause to individuals. The familial nature of genomic information means that there is also potential for serious harm to an individual's relatives or community, such that harm can result even when the individual whose sample is being tested is deceased. In preventing such harms, it is important not to unduly restrict clinical, research and forensic applications that will result in considerable benefits and can better be regulated through alternative means. For these reasons, an offence of non-consensual genetic testing should be introduced and expanded to include samples from deceased persons, subject to appropriate exceptions.