‘I didn’t sign up for this!’- ADF families, genetic information, and the need for transparent and accessible policies
Wendy Bonython1, Bond University Gold Coast 1Bond University, Gold Coast, QLD, Australia
Abstract
Genetic information is paradoxically highly individual and common, facilitating inferences into the health and characteristics of both individuals and their genetic relatives.
Militaries around the world are considering, actively developing, or deploying genetic and genomic technologies in applications including forensic identification of casualties, recruitment and enhancement. As major providers of healthcare to members, many militaries – including the Australian Defence Force – are also key stakeholders in healthcare-related applications of genetic and genomic technologies. Military healthcare raises distinctive ethical and legal challenges not generally encountered in civilian healthcare, which are consequently not reflected in policies and legislation generally applicable to the civilian setting.
Despite these compelling reasons for a robust policy environment regulating use of genetic technologies within and by the ADF we instead see a policy vacuum. Recent Freedom of Information inquiries reveal a disquieting absence of ADF policy governing use of genetic technologies and information. That absence exacerbates the dearth of publicly accessible information regarding use and control of ADF member’s genetic information, or information about how the ADF uses genetic information in recruitment. For those excluded from the controlled ADF information environment – including aspiring recruits and genetic relatives of former or current serving ADF members – there is no information about how and by whom genetic information may be accessed, used, stored, shared, or disposed of.
The presentation highlights inconsistency existing between the current policy environment and the privacy laws and ethical principles governing use of genetic data, contrary to public expectations regarding consent and transparency.
Biography
Bonython teaches and researches torts, public law, and health and medical law and ethics at Bond University in both the law and medical schools. Prior to entering academia, she worked for the Defence, and she is a member of the Defence Department of Veterans’ Affairs Human Research Ethics Committee.